Episode 24--Parenting a Child with Special Needs with Shannon Essler-Petty

In today's episode, Billy and Brian sit down with Shannon Essler-Petty to discuss how raising a child with special needs has been a blessing, has shaped her work as an educator who prepares teachers for their classroom experiences, has turned her into a strong advocate for children with special needs, and an all-around bad ass! 

You can follow her daughter Quinn's adventures on Instagram @keeping.up.with.q. 

You can also contact Shannon at sesslerpetty@gmail.com if you'd like to get involved in helping families with children who have special needs. 

Shannon references the following organizations during this episode.  Go support them!
--Down Syndrome Diagnosis Network of MN
--Jack’s Baskets
--Special Olympics
--Rockin' Moms
--Down Syndrome Association of Minnesota

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Transcript

Thank you for taking the time to listen to The Mindful Midlife Crisis podcast. We hope you enjoy this week’s episode. If this episode resonates with you, please share it with your family and friends. We will do our best to put out new content every Wednesday to get you over the midweek hump. If you want episodes to be downloaded automatically to your phone each week, all you need to do is hit the checkmark, Subscribe, Like, or Follow button, depending on what podcast format you’re using. While you’re at it, feel free to leave our show a quick five-star review with a few kind words so more people like you can easily find our show. If you’re really enjoying the show and you want to help us out, feel free to make a donation to www.buymeacoffee.com/MMCpodcast. You can also access the link in our show notes. We use the money from these donations to pay whatever expenses we incur from producing the show, but, ultimately, we record this show for you so if you keep listening, we’ll keep recording and releasing new episodes each week regardless. If you’d like to contact us or if you have suggestions about what you’d like us to discuss on future episodes, feel free to email us at mindfulmidlifecrisis@gmail.com or follow us on Instagram at @Mindful_Midlife_Crisis. Be sure to check out the show notes for links to the articles and resources we referenced throughout the show. Thanks again for listening. May you feel happy, healthy, and loved. Enjoy the show.

Welcome to The Mindful Midlife Crisis, a podcast for people navigating the complexities and possibilities of life second half. Join your hosts, Billy and Brian, a couple of average dudes who will serve as your armchair life coaches as we share our life experiences, both the good and the bad, in an effort to help us all better understand how we can enjoy and make the most of the life we have left to live in a more meaningful way. Take a deep breath, embrace the present, and journey with us through The Mindful Midlife Crisis.

Billy: Welcome to The Mindful Midlife Crisis. I’m your host, Billy, and, as always, I’m joined by my good friend, Brian on the Bass. Brian, how you doing over there, man?

Brian: I’m president, Billy. There you go.

Billy: Thanks for playing along. 

Brian: Yeah, you bet.

Billy: Brian was not going to do that. You guys just hang around for the end so you can hear how Brian was just going to openly defy and not acknowledge the fact that he wasn’t here the other day for our interview. 

Brian: I had an extended vacation, Billy.

Billy: You did. You got to see your family for the first time in about a year. 

Brian: In a year, yeah. 

Billy: So you are forgiven. I give you a pass on that one. You took the schoolie out to Wisconsin?

Brian: We did, yeah. It was great. So we hit the Yellowstone trip and then came back and went right to Wisconsin, which was also awesome. The kids all slept on the bus. They loved it.

Billy: So you are from Sauk City.

Brian: Yeah, but my parents don’t live there anymore. 

Billy: Okay. 

Brian: They live in Wausau now.

Billy: Interesting. You are in a room today with two Sauk Center Minnesota graduates today. Yeah, yeah. So our guest today is Shannon Essler-Petty. Shannon has a degree in math education, a master’s in education, and a doctorate in education. Shannon taught middle school math for nine years, including in the great state of Hawaii, very lucky of you. Shannon has been a professor of math education at the College of Saint Ben’s and Saint John’s University for 13 years and is a consultant for mathematics education in schools around Minnesota. Shannon has been a panel speaker for different education events and was a panel speaker for Beauty and the Bias. Shannon has been married for 17 years and is also a mom of three amazing children, one of whom has Down syndrome and that’s why we brought her on here today so that she can talk about her experiences being a parent of a child with Down syndrome. And you can follow her and her daughter Quinn’s experiences on Instagram at @keeping.up.with.Q. You can also find Shannon delivering Jack’s Baskets to local families to welcome and celebrate babies with Down syndrome. Shannon, thank you for being here today.

Shannon: Thanks so much for having me. 

Billy: Absolutely. So, Brian, Shannon and I have literally known each other since we were five years old. 

Shannon: This is true.

Brian: That’s great. 

Billy: Yeah, we were in the same preschool classroom. 

Shannon: We were.

Brian: Holy cow.

Billy: Yeah, so we have known — we go way, way back so this is kind of cool.

Shannon: So if we ever want to do an episode on Bill, I can probably —

Brian: You got the dirt. All right.

Billy: You don’t have squat. You don’t have any good stories about me, because if you do, this might be the last interview that you do. All right, so, Shannon, welcome to the show. We always ask our guests what 10 roles they play in their life and what are the 10 roles that you play in your life?

Shannon: All right, the 10 I have. Mom, partner, daughter, advocate, educator, traveler, coach slash fan, storyteller, athlete, friend.

Billy: So we’re going to get to your three here. Your passion for education, I want to talk about that for just a little bit because you have such a passion for education. Can you talk about that? 

Shannon: Yeah. Ever since I remember, I wanted to become a teacher and then when I actually had the chance to be a teacher, man, those kids taught me a lot about learning, about just education in general, and then, when I was in college, I was a TA for the math professor that was there and it was always a lifelong dream to become a math professor educator at some point. And once I started teaching, I started learning more through my master’s program and then I started my doctorate program and then I landed at Saint Ben, Saint John’s and I’ve been there for 13 years. Throughout that process of learning about education, my passion about education and how every student can learn, every student can learn well, my main motto was “Relationships first, academic second,” that’s something that comes into every one of my classrooms, on every single occasion, those relationships first, academic second.

Brian: It’s interesting you say that because I always preached that as far as sales goes to my sales team. I’m like get the relationship then you get the sale. 

Shannon: Right.

Billy: That’s an interesting parallel.

Shannon: Right. When kids know that you care about them, they’re going to do almost anything for you but you got to create that relationship first.

Billy: It’s funny that you bring up sales because I would say that your husband, Rich, is like the consummate salesman. 

Shannon: Oh, for sure. 

Billy: And he’s all about building relationships and you put down partner as one of the three roles that you’re most looking forward to so can you talk about why is that so important to you moving into the second half of your life?

Shannon: Right. When Rich and I first started dating, we really enjoyed each other’s company. It was the two of us, we had so much fun, and we still have a lot of fun but now it’s different, like the focus is on our kids and less on the two of us. And those moments between the two of us are less frequent, I should say. And so I’m really looking forward to the next half of life when our kids start to become a little bit more self-sufficient and I can spend more time with my partner, like he is my partner, he’s my best friend, and I love hanging out with them and doing stuff and, yeah, I’m really looking forward to that second half.

Billy: So when you were in Hawaii, Rich wasn’t out there or was he? 

Shannon: He came out there for a semester to do law school at the Hawaii University.

Brian: How did you guys land in Hawaii?

Shannon: When I was teaching, I got pink slipped when I was teaching in Hastings and I called my college roommate at the time, former college roommate, and I said, “Let’s get out of here. We’ve got nothing keeping us here. Let’s go somewhere,” and I’m like, “Where have you never been and where do you wanna go?” and she’s like, “Hawaii.” I’m like, “Let’s do that.” So a few weeks later, we packed our bags and left and I was dating Richard at the time but he was in law school and everybody kept saying how hard it was to be in a relationship with somebody that’s in law school because they like to argue, they like to come home and practice all of the stuff that they learned throughout the day —

Billy: Oh, and Rich always has an opinion and he’ll choose the opposite of whatever, even if he agrees with it, he’ll choose the opposite.

Shannon: Absolutely. He loves a good argument, for sure. And so I thought what better gift could I give to him than to just leave him alone for the time that he was in law school. So I left and we moved out there, we didn’t know anybody. We kind of just created our own little family out there and my cousin and another friend moved out there. We lived in a hotel for a month. I got a job right away. It was the first one because out in Hawaii, they really, really need good quality teachers and they recruit a lot from the mainland and so I got a job immediately when I moved out there. And it was such an awesome experience. It really was a cool experience. Very different lifestyle, like laid back, surf in the morning if we wanted to, leave by 2:30 in the afternoon to do some more surfing out on the beach. The second year we lived out there, we lived on the beach in Kailua and, man, what a life. Very relaxed, fun.

Billy: So do you have dreams of doing that once the kids are older? Or are you settled in here?

Shannon: Well, I would love to travel once the kids are older and possibly settle somewhere for a little while at a time. My husband has goals of Arizona because he wants to golf. I don’t know that I love golf that much but we’ll see where life takes us. I’d like to travel, maybe not settle in one spot because family is back here in Minnesota and wherever our kids go will probably be where we’ll go.

Billy: So you’ve talked a lot about your kids already here and that’s a big part of why you’re on our show so talk about why are you so looking forward to being a mom the second half of your life?

Shannon: Being a mom has been one of the most amazing experiences ever. It’s so hard and it’s so beautiful and wonderful all wrapped in one big gift. The second part of raising kids is watching them grow into big humans that are doing great things in the world, and in the second half of my life, I’d like to see what my kids are going to do. I know they’re going to do great things, they already do great things. I wrote some of those things already down for us to talk about but, man, my kids are doing some awesome things. And being a mom and being their number one fan and cheering them on from behind is just such an awesome gift to be given.

Billy: And I think that transitions well into your passion for being an advocate. So, can you talk a little bit about being an advocate and it sounds like you’re an advocate for your kids’ sports, you’re an advocate for children with special needs, so talk a little bit about that.

Shannon: One of the things that I tell my students, we do this little stereotype thing of, “I am but I’m not,” and one of the things I bring up is I’m an advocate but I’m not a bitch. Like I fight really hard for the things I’m passionate about, education being one of them, testing is one of those things that I absolutely cannot get behind. And, people, I don’t make a lot of friends when I go into schools or when I go into the capitol and the legislature and they used to roll their eyes when I would walk in to come and talk about and fight about the MCAs, but there’s so much work to be done for my daughter Quinn that that advocating part, whether I want to take that role on or not is going to be a part of my second half, for sure.

Billy: And your advocacy for Quinn is a big reason why you are here so we’re going to take a quick break and then when we come back, we will have that conversation about raising a child with special needs and how to be an advocate for children with special needs as well. Thank you for listening to The Mindful Midlife Crisis. 

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If you’re listening somewhere safe and quiet, close your eyes and slowly inhale for four, three, two, one. Hold for seven, six, five, four, three, two, one. Slowly exhale for eight, seven, six, five, four, three, two, one. Let’s do that one more time. Inhale for four, three, two, one. Hold for seven, six, five, four, three, two, one. Slowly exhale for eight, seven, six, five, four, three, two, one. Go ahead and open your eyes. You feel better? We certainly hope so. And now, back to the show.

Billy: Welcome back to The Mindful Midlife Crisis. We are here with my good friend of over 35 years, Shannon Essler-Petty.

Brian: Do you know how old that makes you sound? 

Billy: Yeah. I mean, it is the midlife crisis podcast so —

Brian: Well, there’s proof right there.

Billy: Yeah, long time ago, that’s three and a half decades. There’s over three and a half decades that we have known each other. I mean, that’s — wow, that’s crazy.

Brian: You’re coming up on your diamond anniversary, you two.

Shannon: Oh, yeah. And the fact that I’m still hanging out with Bill, I mean, that says a lot about Bill. He’s a great guy.

Billy: Well, thank you. I think it says more about you and maybe your lack of connections and network. I’m sorry that you have to resort to me so but I appreciate it because you are an amazing person and that’s why we wanted to have you on because your passion in what you advocate for is very transparent and following you on social media, you’re not afraid to speak your mind and it’s really why I admire you and you’ve been like this for a long time, in my opinion, that you have spoken your mind and you’ve stood up for what is right and you stood up for, “Hey, let’s make change and let’s do better wherever we can do.” And I know you do a lot of work with children with special needs and I just want to kind of go back here and talk about where this comes from, and, obviously, having a child with Down syndrome is going to make you hyper aware but I feel like you’ve taken it to another level. So, your youngest daughter, Quinn, was born with Down syndrome so can you walk us through how you found that out, when you found out during your pregnancy, how you and your family process through that?

Shannon: Right, absolutely. So at the end of my doctorate program, we decided that we wanted a third child and that was going to be our big celebration, our big finale, here we go, and we sure ended with a bang. So, at about 20 weeks we went in and they saw some soft markers, which then indicate possible things that could be with a baby once the baby’s born. And so they asked if we wanted to know any more further and both my husband and I were like, “It doesn’t matter, but maybe it might be helpful for us to know now so that we can prepare.” Part of their conversation, though, tends to be you can find out so that you can make other choices and that’s a conversation that goes on everywhere right now and there’s a lot of countries that are hoping that that person will make that decision to terminate after they find this diagnosis and so that’s where I’m seeing that advocating goes beyond just even tomorrow. I mean, it’s going to go on forever. And so, at 20 weeks, we were offered a blood test that was fairly new, it was only about a year old at that time, so they took blood from my arm and within that blood sample, they could separate my chromosomes from baby’s chromosomes and they can tell gender, they can also tell you any abnormalities that might happen with baby and it’s 99.9 percent accurate. So, we got the test results back. Richard was on vacation with his father, and just a little back story, my brother and his wife had that same test done a few weeks earlier and it came back positive for Down syndrome and so we kind of went through that process with my brother and his wife so then me hearing the results, Richard was gone, I said there’s no way that we’re going to get this positive result as well for Down syndrome, it doesn’t work that way, right? Or so we thought. And so when the genetic counselor called and said, “Are you sitting down?” And I’m like, “No, no, no. Why? Why would I need to be sitting down? What are you gonna tell me?” and then it proceeded to be like, “I’m sorry, your test came back positive, your child will be born with Down syndrome.” And in that moment, it was, “Okay. Okay, we’ve got this.” I then called back and I said, “Well, my sister-in-law just had a test a couple of weeks ago, she has Essler as her last name, my hyphenated name has Essler, is there any way you could get these tests mixed up? “No, no, no, yours went to California, one went to New York,” and whatever. So I called my husband, we cried. I called some of my best friends, cried. Called my mom, cried. We did a lot of crying. And I look back in that moment and I’m so thankful I had that moment. I really needed to take those emotions and put them all out there in that moment so that I could pass — we talk about a grieving process because when you’re pregnant and you’re going to have a child, you just hear, “Well, as long as he or she is healthy,” or whatever, like now you’re given a diagnosis that you weren’t expecting and so you do have to take that moment to grieve the child you thought you were going to have to now accept the child that you are given. And so lots of doctor’s appointments. My doctor at the time was amazing and I cried a lot with her. I was very private about our diagnosis at that point. And she just kept saying, “Shannon, when you meet her, you’ll know. You’re gonna love her,” and I’m like, “What if I don’t like her?” “You are gonna love her. When you meet her, you’re gonna love her.” And I really took those words to heart because when I did have Quinn in the hospital and later on my chest, I just looked at my doctor and I’m like, “You’re right. I love her. She’s perfect. She’s everything I hoped for and expected and beautiful, wonderful.” And I always say she’s the best gift I never knew I needed in my life.

Billy: I like that you walk through a very honest emotions and thoughts that you had, like, “What if I don’t like her?” I can only imagine that that’s even really difficult to like admit and so I’m wondering is there a guilt process that goes through that, that, “I can’t believe I’m feeling this way”?

Shannon: Oh, for sure. It was a lot of guilt of like, “Why am I not happy and excited about this child that I’ve wanted, I’ve prayed for, like this is supposed to be the big one, the ending, the big finale and now God’s giving me this child that I was not expecting.” I was not expecting this diagnosis. And the important part about knowing that there’s a grieving process is that not a lot of people talk about that and the more moms that I meet when I deliver baskets or whether you get the diagnosis early or you get the diagnosis after, that is one of the things that we talk about is it’s okay to feel this way. This is perfectly normal. You have to go through those feelings. Some go through them a lot faster than I did. I grieved for a long time. And I feel like you have to go through that process to then move on to the next part. And then, man, we took off running. She was born and it was like, “All right, now we’ve got a new goal. What are we gonna do with this? Because this is awesome. We were given a gift and we can’t waste it. And so what are we gonna do with it?” And we just took off running from day one.

Billy: We’re going to talk about this in a little bit more detail later on in the episode but both you and Richard were college athletes and both your children now, well, three of your children are involved in sports, did that play a role in some of those thoughts? Like, “I’m not gonna be able to play catch with my child or run with my child the way that I envisioned.”

Shannon: Oh, for sure. One of the first thoughts was, “Oh, my God, she’s not gonna be the sister that my daughter wanted. She’s not gonna be in a wedding with the maid of honor, she’s not gonna play all these different roles,” and, yeah, we’re going to have to do all things differently and, from day one, a lot of the times they talked about what she won’t be able to do, “She probably won’t be able to ride a bike. She probably won’t be able to speak clearly. She probably won’t be able…” and if you follow my Instagram, you know that Quinn is kicking ass on all of those things. She took off on a bike on day one and just went and now I regret that day because now I have to chase after her all the time. She showed up to tee-ball the first day of tee-ball and stepped right up to the plate, hit the plate, and got herself in a position to hit the ball and took off running and threw the ball through that tire and none of the other boys could do it and they were all just watching her like, “What the hell just happened? She just threw that ball through that tire,” and just so excited. She loves and celebrates everything. On my Instagram page too, I have where we went golfing in Florida and she — it took her 30 shots to make it in the hole but by the time she made it in the hole, it was like the greatest NFL superstar celebration that just happened. So, yeah, definitely some of those thoughts happened in the beginning of limits. And on the Instagram page too, I have a picture of her that says, “Don’t limit me,” and that’s kind of been our driving force. Like my husband said, “I wish people wouldn’t tell you no, because it’s kind of miserable when people tell you no.”

Brian: Isn’t it kind of fun proving them wrong, though? 

Shannon: Oh, for sure. I mean, I will find a way to make it happen. Like that’s kind of the other thing is if you tell me no, it will be yes at some point.

Billy: So you mentioned this that you fear that Quinn wouldn’t be the sister that your daughter always wanted, that kind of thing. So can you talk about what conversations you had with your older children around being supportive big brother, big sister to Quinn?

Shannon: Yeah, absolutely. When I brought Quinn home from the hospital and both of them were just celebrating having this little tiny human in our house. It was like, “Oh, that was not what —” I don’t know what I was expecting. I don’t know if I was expecting them to grieve with me or cry with me or whatever, notice that she was different, but they just, man, they loved her up from day one and that was sort of my first beginning of therapy for myself was watching my kids with her. And that’s another thing that I talked about too with lots of people, if you want to know how to treat Quinn, watch her siblings. There’s something called rocking siblings and it’s a different role to be a sibling to a child with Down syndrome but, man, my kids have become better humans because of Quinn from the beginning, like showing her off in their classrooms and they do presentations, they put together these presentations for World Down Syndrome Day. My daughter does Rock Your Socks. Nolan also then started doing that. We read children’s books in their classrooms where then they bring in Quinn, they talk about Quinn. We do PowerPoint presentations and Ady’s taking on another role too of we did Young Athletes and Ady was a helper for Young Athletes and then we’ve done the Polar Plunge where all of us jumped in cold water, raised some money for Special Olympics. We’re not a part of that quite yet, she’s not old enough, but, eventually, we will. That passion behind my kids and —

Brian: Which is a great cause, by the way. I always donate to Special Olympics, always.

Shannon: It’s so, so great. And then Ady also wrote an essay in fifth grade for the United Way and there was over 600 applicants and she ended up winning the grand prize as she wrote about being an advocate for her sister and for kids with Down syndrome. My kids have really taken on this amazing role of advocate, big sister, but then also the really cool part is when they see someone with Down syndrome, they are just drawn. It is like a magnet. They’re like, “Mom, Mom, Mom, can we go over there and say hi? Can we go over there and say hi? I’ll tell them that we have a sister with Down syndrome. Mom, do you think that person has Down syndrome? Can we go over there and say hi?” Like they’ve really taken on this role of being attracted to people that are different and I love that part of they see the humans first and I love that part of it.

Billy: How old are all your children? 

Shannon: Yeah, so Ady is 13 and Nolan is 9 and then Quinn is 6.

Billy: Was there a preparatory conversation that you had with them before Quinn came home? Because it sounds like they talked to her immediately so I’m wondering if there was a preparatory conversation.

Shannon: There was not, and my husband has had this kind of philosophy of, “We’re not going to treat Quinn any different than the other two,” and so we’re not going to point it out. We’re not going to shine a light on it. Eventually, the kids are going to figure stuff out and whatever. But we did have a conversation with Ady, I remember, because it was approaching World Down Syndrome Day and we wanted her to maybe do something to celebrate with her classroom and the Rock Your Socks campaign and we were telling her, “Quinn has Down syndrome so some things might be a little bit harder for Quinn, like eventually she’ll know what she wants to say but sometimes those muscles in her mouth are not gonna form the words that she wants to say but, you know, she’s gonna wanna communicate,” or, “She might be a little bit slower to learn a few things. Maybe, maybe not.” And right away, you could see my daughter’s mind like going and then she says, “Mom, there’s this kid in my class that when we run the mile, he’s always last. It takes him a long time to run that mile. Does he have Down syndrome?” And I’m like, “Well, I don’t know. No, probably not.” And then a little while later, she said, “Mom, remember when it took me a long time to learn how to tie my shoes? Did I used to have Down syndrome?” So like that very innocent child trying to figure it out. It was really just super innocent and adorable. 

Billy: It looks like the two of them have presented in front of pretty large groups here. You jotted in our notes that Ady spoke in front of 400 adults at the United Way celebration and Nolan has presented to his class the last few years about Down syndrome on World Down Syndrome Day.

Shannon: Yeah. Yep, they’ve really taken that role and they were bummed when COVID happened because they couldn’t do it. They had a whole thing ready to go and then they couldn’t do it that year. But, yeah, Ady spoke in front of the United Way Luncheon in front of 400 adults, which was amazing for her at the time, she was fifth grade, and then she all she kept asking was, “Can I bring Quinn on stage? Can I bring Quinn on stage?” and so she did bring Quinn on stage and then, of course, Quinn stole the mic and all of her glory and was saying hi into the microphone and that was pretty awesome.

Billy: So you’ve kind of touched on this a little bit but can you talk about how parenting Quinn is different yet the same as parenting your other children? You kind of said that, “We just approached it the same way,” but are there different approaches that you take now as she enters school age and having conversations maybe with her teachers? We actually just had the conversation with Tandra Rutledge last week about how she advocated for her son, Matt, who has ADHD, so I’m curious how you get involved with that, especially because you are in education, you have a PhD in education and do you ever find yourself mama bearing it and then like getting close to that line?

Shannon: Oh, for sure. I mean, I have a necklace that has a mama bear on it. I was going to wear it today but then I decided on the one with the kids’ names on it. But the older two, what I talked about in my classes too is every kid is so different in how they learn, right? Ady’s the textbook kid. You put a textbook in front of her, she’s the one size fits all. The way textbooks are written, like she can open it up, read it, do a few things, and then she’s learning. Nolan is very different. He’s got to experience it to learn it. So he’s not going to read about it in a textbook, he has to experience it. And then there’s Quinn. Quinn is going to be in the classroom as well and so how do you work with a kid like Quinn? And everyone benefits when Quinn’s in the classroom and that’s one thing our district is really good about inclusion. Minnesota is actually pretty good about inclusion overall, just knowing other moms in other states. We’re pretty lucky here. And so the whole idea of inclusion with Quinn in the classroom, she has a para so now we have lots of people helping us on our team and it’s been fantastic having all of these people surround us. From day one we were on Help Me Grow, which is an organization that comes into your house and provides physical therapy, speech therapy, OT so occupational therapy, so they’ve been there since basically six weeks and then we rolled into preschool. We had different appointments for her at CentraCare doing her rehabilitation so PT, OT, and speech, but then you get into the world of school. What’s our number one goal for Quinn? Like they ask us that all the time on IEPs. They ask us that in meetings and both Richard and I are like, “We just want Quinn to be Quinn.” We want Quinn to be that kid that people recognize, that people know, that they love, that she’s just a part of their everyday life. She’s not a kid that pops in and out every once in a while, which can happen in education, like we get so wrapped up in test scores or ability wise as far as academics goes that we forget the really important piece is just being together and how much Quinn can learn from her peers and how much her peers can learn from Quinn. It’s so cool to watch her peers in her classroom. They all came to her birthday party a few months ago. And just watching them with Quinn, like she was doing something and they’re that like, “Ah, that’s just Quinn,” or their parents were coming up to me and telling me stories about Quinn and, “Oh, I heard she uses a device sometimes for speaking,” which she does carry around a little device that has words on it with pictures that she can use and one of the ladies at the front desk said, you see Quinn walking through the halls and everybody knows her, everybody, “Hi, Quinn,” she’s got high fives for everybody and one day she must have been just on a mission and they were all yelling hi at her and she whipped up her device and she scrolled through it and she found the one that says hi and she pushed the button and it said hi and then she just kept going. She knows how to say hi. So it’s kind of fun that I can talk about this with up and coming educators about the importance of having all kids in the classroom all of the time and in pushing services. And you do have to become an advocate for some of that stuff because it’s really easy for people to just, “Well, Quinn can go do this while everybody’s doing this,” like she can have a separate phy ed rather than be in phy ed with all of her peers with a helper. And so those conversations, again, like the advocating never stops. So we’ve been so fortunate along the way, though. Her whole team has been just fantastic. 

Billy: She’s in public school,

Shannon: Yep. 

Billy: And the school where I worked, they created an adapted PE program and now that adapted PE program has grown into an adapted culinary program and adapted arts classroom as well. And if you don’t know what adapted PE means, it’s a group of mainstream students and then a group of students with special needs and they all take class together, usually the mainstream students, they’ll create a lesson plan or they’ll create a group task for everybody in their group to accomplish that sort of thing and it’s really a great program and when you use that word “inclusive,” that’s exactly what it is. And so shout-out to those programs that are in our building. 

Brian: And I really didn’t think about that but there’s definitely a socialization aspect and the curriculum aspect, you know what I mean? That’s a really good point.

Billy: So we talked about how active you are as an athletic family and can you just talk about like what are some of the activities that Quinn is involved in? You played semi-pro football at one point and Rich played college baseball, so can you talk about those experiences first because those are actually really interesting so can you share about those so we can kind of get an idea as to like what we mean when we say you’re an athletic family?

Shannon: Sure. So I did play college softball and then I rolled right into playing for the Minnesota Vixens, shout-out to the vixens who are still playing. They’re in season right now. It’s a Women’s Professional Football League. And to say that that taught me a lot about life would be an understatement. Those women on that team were phenomenal. I learned so much just about football, about being an athlete, but also being a good teammate. They taught me so many great life lessons, and we traveled all around, played football. I was the halfback at the time and our motto at that time was, “Hit her hard. If she gets up, hit her harder,” which was on all of our gear so you can imagine when we would go places after a game, my husband was wearing the shirt and I was a halfback who got basically her ass kicked by very large women and I would have bruises all up and down my arms and my legs and sometimes my face and the looks, the shaking of the heads towards Richard and I was handed a pamphlet multiple times about creating a safe environment for myself if I needed to leave my current situation.

Billy: Oh, my goodness. 

Shannon: And it was all inflicted by me, I’m out there on the football field doing my thing, living the dream, and my poor husband was along for the ride and, yeah. So that was such an awesome experience and I would have loved to keep playing but my body obviously is not going to let me do that. Plus, I have to keep up with Quinn. Yeah, that was such a fun experience. And then Richard also played college baseball and he’s still playing baseball. We both still play volleyball. We’re both still pretty active in sports. I work out at the gym five days a week, I have to. I have to keep getting stronger. I don’t think I’ve hit my peak yet but I feel like I might almost be at my peak and Quinn is like, “Nope, I’m getting faster, stronger every day so try to keep up.” And so we do — we’re at the ball field all summer long, baseball, tee-ball softball. My daughter’s really active in basketball. Now she’s doing some cross country this fall to get in shape for basketball. Yeah, pretty much we don’t do a lot of traveling as a family unless it’s for a sporting event so we’re constantly out on the field. 

Billy: So then can you talk about how that athletic involvement has shaped Quinn and how it shaped her teammates and what lessons they have learned as a unit, as a team?

Shannon: Right, sure. So the first day we walked in and she walked in with authority, she put on that helmet, grabbed that bad, went for it all, and the funny thing is every time she hit off the tee into the fence, she needed to run the bases because that’s what you do after you hit the ball, you run the bases and so, patiently, everyone had to wait ’til she came all the way back home to then hit the ball back into the fence to then run the bases again to hit the ball back in the fence. And then just showing up and showing those guys like, “Hey, I can do this too,” and it’s really fun to kind of watch the parents watch all of this happen, because it’s not always beautiful and wonderful when we’re on the field. Sometimes, it’s me getting down at her level because she’s kicking and screaming because she doesn’t want to be out there and, in those moments, it’s like this will be worth it. At some point, she’s going to be out here doing this thing that people maybe underestimate her abilities just as she walked in on the first day and here she is hitting the ball, throwing the ball, running the bases, doing her thing in her cute little uniform. And we really want to instill that idea of being an athlete in all of our kids because, right now, as I’m coaching, I’m working with the girls right now with confidence. It’s a humbling experience to be on stage doing a sport and striking out. What does that look like? Well, did you swing? If you swung all the way through, that’s not a bad deal. So don’t hang your head over that, plus it’s contagious. So if you have an error on the field and you come into the dugout, you got to figure a way to pick yourself back up. You can’t let your head hang too long because now everybody else is going to kind of pick up on that. And then the hustling. So, we work on hustling a lot and move quickly, get out there, show your professionalism even when you’re eight years old. Now Quinn has her own agenda. If she’s not going to run, she’s not going to run, I might have to carry her out to that spot in that moment because Quinn runs basically everything in my household right now but I would say that the idea of sports, creating that hard work ethic, being a part of a team, like I said with the Minnesota Vixens, those teammates taught me so many valuable lessons about life in general and just what it means to be a good teammate, especially when you’re trusting somebody else with your life when you got the ball and everybody wants to kill you. You got to have some trust in your teammates at that point. Yeah, the athletic part of it, we will hopefully continue athletics for a really long time and Quinn will be a part of it, whether it’s through Young Athletes. I’d love to see her keep going with just regular old community ed or with her school sports or whatever, but if we ever need a transition in the Special Olympics or whatever, we have those options too. 

Billy: Do you ever hear impatience coming from parents or even from the kids on the field? And if you do, how do you respond to that? How does that affect you as a parent?

Shannon: Right. So I have really tried really hard to work on my parenting in a spotlight, because you really are in a spotlight. And I have this idea that people are always watching and they’re judging, and I hate that part of it when my parenting becomes on a spotlight. And so I haven’t really heard some of, but I see the people watching us and watching how we’re reacting to Quinn maybe not following through on what she’s supposed to be doing or maybe there’s a challenge that happens out on the field or whatever it might, or it just could be in general public and I know people are watching because people are curious, like, “Hmm, how is this mom gonna handle this?” You may or may not pay attention to other moms but you’re really going to watch how I’m going to react to this, at least I think. “How is mom gonna deal with this? How’s dad gonna do this?” and Richard has way more patience than me, way, way more patience than me, like Quinn, I was telling these guys earlier that Quinn ran away from home and she got a half mile away from our house and broke into somebody’s house and sat down at their living room and was just hanging out and dad came out and was like, “I don’t think this kid belongs here.” So, yeah, luckily, the son came out and was like, “Why is Quinn in our house?” so they knew each other from school, Quinn’s never been there before, and then the sheriff showed up and whatever else and I told my husband, I’m like, “You’re coming with me because I don’t know which mom’s gonna come out. It’s either gonna be the really sad, like, oh my God, and happy mom, emotional, or it’s gonna be the really angry mom. So you need to come with me in this moment because I’m not sure which one, everybody’s gonna get to witness when I get over there.”

Billy: Well, I think that’s a good time to take a break because when we come back, you had mentioned that Quinn runs the household and you said that you had all sorts of stories to share with us so I think we’d love to hear some of those and how you respond to those as a parent. Thank you for listening to The Mindful Midlife Crisis. 

Thanks for listening to The Mindful Midlife Crisis. We will do our best to put out new content every Wednesday to help get you over the midweek hump. If you’d like to contact us or if you have suggestions about what you’d like us to discuss, feel free to email us at mindfulmidlifecrisis@gmail.com or follow us on Instagram at @Mindful_Midlife_Crisis. Check out the show notes for links to the articles and resources we reference throughout the show. Oh, and don’t forget to show yourself some love every now and then too. And now, back to the show.

Billy: Welcome back to The Mindful Midlife Crisis. We are back here with Shannon Essler-Petty and she is going to tell us a little bit more about how she continues to keep up with her daughter Quinn. So, you said that Quinn is running household now so can you give us some examples of that? 

Brian: Before we do that, though, can you tell us where to follow, our listeners, where can they follow you? 

Shannon: Oh, yes, they can follow us on Instagram in keeping.up.with.Q, and I really created that page for parents. I get a lot of letters or messages or whatever that, “Hey, I have a friend that’s gonna have a child with Down syndrome and I love following your page. Is there a place I can send them? Or can I send them a couple of pictures so that they can see that their life is actually gonna be pretty amazing?” and that was one of the first thoughts was like, “Oh my God, my life is gonna be over. We’re gonna never see the light of day again. We’re gonna be in our house all the time, we won’t be in public anymore.” I don’t know why those dark thoughts happened but they kind of just did when I was pregnant, and then, all of a sudden, I was like, “We gotta share this with the world. We’re not doing those things. We’re doing all the things that are amazing and great. We’re out there. We’re living a really good life, having a lot of fun.” And so that Instagram page is a place, well, if you want to smile, she can create a really good smile on anybody’s face, but then also if you know somebody that has a child with Down syndrome or somebody that wants to connect or somebody that may be having a child with Down syndrome that has some questions, that’s a fun page to go through.

Billy: And it sounds like she’s well liked at school by adults, by her peers. So you said that she’ll put a smile on anyone’s face. It sounds like she does that wherever she goes.

Shannon: She does, and now I’m just Quinn’s mom. At one point growing up, I was Derrick’s sister than I was Rich’s wife, now I’m Quinn’s mom.

Billy: You go through a little identity crisis over there. 

Shannon: Maybe that’s a whole ’nother episode.

Brian: I just went to your page. The baseball outfits are adorable. 

Shannon: I know.

Brian: Oh my gosh, at that age, kids playing baseball, it’s awesome.

Shannon: Oh, yeah. And she’s a badass, like she just walks out there, she owns it.

Brian: She looks like it. 

Shannon: Oh, yeah, for sure.

Billy: Oh, look at that. 

Brian: Right?

Billy: Oh my gosh, she’s got the bat behind her back and behind her neck like that. 

Brian: You guys gotta go to this page. This is cool. 

Shannon: She’s a badass, for sure. She is changing perceptions and, yeah, just out there doing her life and, in the process, I said she’s going to change the world with her smile and she really does. Everywhere we go, people are just drawn to her. And sometimes they’re not even looking for it, like we were walking into Target one day and an older gentleman with his wife were walking into Target and she just grabbed his hand, started swinging it, and looked up at him and was like, “Where are we going next?” and he was kind of looking at me like, “Well, what am I supposed to do?” I’m like, “Just go with it. She’s loving you right now.” We walked into Target and then I took her from there. And then my other kids too, at one point, we were sitting down at a restaurant and they could see some people that were looking at Quinn and my daughter got up and I’m like, “What were you doing?” and she’s like, “Well, I just went over there and said, ‘Do you wanna come over and meet her? She has Down syndrome. You can come over here and meet her. She’s pretty awesome. That’s my sister.’” I mean, not only is Quinn changing the world but my kids are also changing the world through how they’re navigating this world with Quinn.

Billy: You were talking about some mischief that Quinn got into earlier.

Shannon: Yeah, I feel like some people said we should put a GoPro on her and create a YouTube channel just for that because it would be fantastic. She would have a lot of followers. So, one of the things with Quinn is that she is a runner and so I don’t know if you even know that they have this stuff but they have a GPS system that we put on her and she wears in her ponytail so we have a live GPS at all times on our phones. When she leaves our house in the morning, gets on the bus, goes to school, like her whole care team then gets alerted that Quinn is in the building. When she comes home, gets in her safe place, everybody at home as alerted. Babysitters, PCAs, everybody has this app, and then you can create a perimeter so when she breaks the barrier, all hell breaks loose on everybody’s phones, whatever. So we also have Fort Knox at our house because she does get out of our house but Fort Knox is only as good as the users of Fort Knox, so if somebody forgets to put an alarm on or somebody forgets to deadbolt one of the doors, so we have code in code out so you got to code both ways to get in and out of our house.

Brian: I got a quick story about that. So my middle kid was about two and a half and we were staying in a hotel and my brother, me, and my two little ones at the time were, yeah, about two and a half and four or five-ish. My brother had come in, I had set the deadbolt, he went out, came back in and didn’t reset the deadbolt so I woke up at three in the morning and my two-and-a-half-year-old was sleeping next to me when I went to bed and I woke up and he wasn’t there.

Shannon: Oh, God. It’s like a parent’s worst nightmare.

Brian: That feeling, that feeling. We’re in a hotel with a waterpark so I’m like, “Oh my God. What — Oh, boy.” So I immediately jump up, I look around the hotel room, he’s not there. I look up the deadbolt, it’s open, I’m like, “Oh, this is great.” So I head down to the front desk. Charlie had been down there for about an hour and a half, they found him on the stairs to the waterpark. Thankfully, there was a big gate and it was locked but they didn’t know whose kid it was so they kept him at the front desk and when I woke up and discovered he was gone, I booked down there and then we got him back. But I completely understand your point and it’s, yeah, that feeling when you know they’re gone, it’s like, “Oh, my —” Just complete panic.

Shannon: It is. So, yeah, she’s definitely gotten out of our house when somebody forgets one part of it, then it becomes the perfect storm if somebody forgets one thing and that one day she made it a half mile, I was charging the GPS so we didn’t have it on her when she got out of the house that morning and I was one minute behind her and had she had the GPS on, we would have found her immediately but, instead, she ended up in some random’s house hanging out in their living room playing with their stuff. Yeah, and I kept thinking in that moment like, “Oh my God, this is — I’m gonna be on the news, I’m still in my pajamas, this is the moment my whole life changes. I hope it’s not the whole moment my life changes but this could be the moment my life changes,” and so it was definitely a really hard day from that point on but then, now, everybody’s back to making sure we check all the locks but even in a second, my husband came upstairs one day and he was just going to tell me something, he came back down and already she was gone out the front door. Luckily, our neighbors were all out there but, yeah, she’s been in more houses in our city than I ever have been, just hanging out, walking through the front door like she owns the place and just making herself at home and many houses she knows where the treat cabinets are so then she just helps herself and, oh, yeah, that has definitely — and I’ve heard from other people, the sensory part of just different things that kids have, like we have a sensory swing downstairs to kind of keep her that close comfort when she wants something like that.

Brian: Can you explain to me, for the uninitiated too, what is a sensory swing?

Shannon: Yeah, it looks like a hammock but it’s a swing so it just hangs from our ceiling downstairs and when she’s tired or when she has a lot of energy or whatever it might be, she just go sits in that swing and she just goes for — she could be down there for 20 minutes to 40 minutes down there in that swing.

Brian: Okay, so it has kind of a rocking motion. Okay. 

Shannon: Yeah, and it keeps her nice and tight and controlled.

Billy: So what is, is it the motion that she enjoys or —

Shannon: I think it’s the motion, yeah.

Billy: Because you had talked about before we got on air hear that she has like a compulsion to move and like there are some characteristics where you can be like, “Okay, we can do this. We can do this to stimulate her,” but the compulsion to move, and you’re talking about maybe we could get her a treadmill but then there’s the sensory is missing part of it. 

Shannon: Yeah. So when she runs, she gets a runner’s high out of it, and to replicate that is super hard. Yeah, it’s really hard to think about even how to try to replicate that freedom because if I’m running behind her, then it’s still not the same thing as her just running on her own and so we will — I don’t know if she’ll outgrow it, people say she probably will outgrow it, but, at some point, it will serve her well, hopefully, because she is fierce and she is doing what she wants to do and she’s got her own agenda and you’re not going to disrupt that agenda, even if it’s not safe in the moment. Even this last weekend on the Fourth of July, she was perfectly fine sitting on the dock and, all of a sudden, she just got up and she was like, “Hmm,” she ran over to a boat, hopped in the boat, turned the key, and, luckily, she couldn’t get the boat in gear because we could have had a really big mess at that moment. But it was like, “How did you even come up with that?” That was one second and, all of a sudden, you’re like in a boat and you’re turning the key and you’re ready to go, like holy…

Billy: Wow. 

Shannon: So, again, the reason why I have to go to the gym all the time is because I have to keep up with this kid. She’s amazing. She’s so fast. She’s like a ninja. We call her a ninja at our house because she can escape Fort Knox and she’s super sneaky and fast. And it’s crazy.

Billy: So then, do you guys live with like a heightened sense of panic?

Shannon: Well, my husband would think that I do, yes, but I’m also the keeper of all of the things, like I’m the keeper of the worries, I’m the keeper of all the mom things so my mind is always on alert, where he is much more like, “This is our life and we’ll take it as it comes and we’ll just deal with it as it comes along.” Like now I have a thing on the door that has a picture of a stop sign and Quinn saying stop and then hand with mine holding it and then her giving the thumbs up so like you need an adult to go through the door, and one day I watched her at the door and she stopped and then she went like this, high five, side, side, down low, too slow to herself and then she went out the door and I’m like, “Oh, no, no, that’s not what that means. You need to be holding, that’s not a high five,” so in her mind, she justified she met all the goals and then she was out the door. And I was like, “No, no, you’re supposed to have an adult with you in your hand. That’s not a high five, low five kind of situation.”

Billy: This kid is way too clever. Oh my goodness. 

Shannon: It’s quite amazing because, yeah, I feel like every day she gets a little faster, quicker, smarter and, yeah, that’s — yeah, we don’t relax a lot at our house.

Billy: So as someone with years of education experience, how does that experience come into play in raising Quinn and then, at the same time, how has Quinn shaped you as an educator?

Shannon: Right, absolutely. 

Brian: Great question. 

Shannon: Yeah, that’s a great question. One of the things obviously with every student that walks through your classroom, something special makes them tick and you’ve got to figure out what that is so that whole relationship piece, finding out, and, with Quinn, it’s a lot of like finding out what works and then, “Oh, shoot, that doesn’t work,” trying this and then it doesn’t work or trying this and this one really works, like if you can get her to think it’s her idea, she’s on board for anything, but the second she realizes it’s not her idea, now she’s done, which I think a lot of kids are like that.

Brian: Oh, yeah, all kids, exactly.

Shannon: Right. And so, within education of finding the things that make those kids do the amazing things that they do, all of them when they come through your classroom, it’s kind of the same thing with Quinn, and then knowing that, it’s a humbling experience being a teacher, it’s a humbling experience being a parent, because what works for one kid doesn’t necessarily always work for the other kid. And then bringing that into my classroom, my students love Quinn stories and so I do share a lot of Quinn stories but then I also talk about like, “Here are the things from a parent perspective,” IEP meetings are really hard, we have to sit through meetings that tell us our kid can’t do all of these things and I cry a lot after those meetings. We had an assessment through children’s so that we could get on a waiver and that assessment, it sucked because it was a two-hour assessment where they just really drilled her on a whole bunch of things for typical kids and she couldn’t do any of them so then, at the end of the time and the reading of the assessment was like, “Well, she’s at about a six-month level for this, for that,” and there’s a human side to this too, like I’m a mom and it’s really hard to have those conversations of, “Your kid can’t do this, your kid can’t,” but what can she do? She can do pretty amazing things right now. If you’ve seen on my Facebook, she can count to 10, she knows her ABCs. I mean, she’s rocking a lot of cool things right now and then celebrating those little things. So it might not be, again, like the whole idea of standard, the standard academics or we put all kids that, at the end of third grade, every kid third grade should be able to do this. Those are suggestions. Those shouldn’t be the end all be all type of education. And that’s the same thing for Quinn, like Quinn’s not going to be there but she will be somewhere. She’s going to grow. She grew so much this year in kindergarten. It was so fun to watch. And just by having the experience of being in the classroom with her friends, her peers, all of the things that she did in the classroom. Distance learning was a little bit harder, I’m not going to lie, she doesn’t like sitting in front of a computer watching stuff like that. 

Billy: What was that like? So I wanted to ask that, what was her distance learning experience like for you? What was it like for her? What was it like for her teachers?

Shannon: So I can’t be Quinn’s teacher, I learned that really early, which most parents probably realize they can’t be their own kid’s teachers. So we were so fortunate because we had people from the education department that were not in class sessions during those different times so they came to the house and worked with Quinn so I could go teach. Yeah, we’re so fortunate that we have those resources. And I will say her time with Laura and Hannah, she grew so much in such a short amount of time because she had one on one basically. They’re going to be educators, they’re now both going to be teaching this fall, but she had the experience of that one on one educator sitting right with her doing stuff online but then doing stuff with her right in front of her and we had an amazing experience because we had the resources for it. If it had been me, I would have lost my mind. Last spring was really hard because I was trying to teach classes online and tried to do Quinn’s stuff and that was really hard.

Brian: I want to touch on something you said earlier though, a quote came to mind from Einstein, actually, while you were talking about the assessments and everything, and Einstein’s quote is, “Everybody’s a genius, but if you judge a fish by its ability to climb a tree, it will live it’s whole life believing that it’s stupid.” I mean, to your point, focusing on the great things and amazing thing she can do is not necessarily part of the normal standard program that she’s in but you have to kind of adapt it to find that.

Shannon: Right, absolutely. And I tell my students too like if you haven’t found the thing that’s working, like if your kids don’t know if they’re not fluent in facts, that’s you, you haven’t found how they look. Maybe you’re only trying memorization and that’s not going to work for a kid like Quinn. It might not work for a lot of kids in your classroom so what else have you tried? I think a lot of the times in education, we feel like it’s sometimes the survival of the fittest, like either you get it or you don’t and if you don’t, that’s too bad. And we end up breaking kids because of putting them on the same level as a test score or whatever it might be and our job is really to raise these confident kids in every subject. Like when a kid comes back and is like, “I’m so bad at math, I suck at math,” third grade is usually when that happens and we know what happens in third grade, we have testing, we have memorization of facts and whatever else, and through my research, that’s when that happens is in third grade when kids find out they’re a failure of math and that’s in our role in education. Our role in education is to raise these humans, one, to just love each other, learn how to be with each other and then, second, to raise them as confident academics or confident in their own academics and that might be at different levels, it might be happening at different times, it might be at a different pace, but raising these confident kids rather than taking them away from them.

Billy: So then, with that, what do you want Quinn’s teachers and her classmates to know?

Shannon: That’s one thing that we talk about a lot. Her classmates have been amazing. It has been so fun to watch how they do life with Quinn. They just love her. They know that she has these little things that make her a little bit different but, yet, they don’t see it that way. They just see Quinn as Quinn and they include her, they make her really a part of that classroom, which I love, and that’s only going to happen with inclusion. Because if Quinn was only in there one day a week, that’s not going to happen. Those relationships aren’t going to happen. Those bonds. None of those things will happen if she’s not in the classroom all of the time. And just even growing up, how kids with Down syndrome when we were growing up, they might stop in for a minute and deliver coffee or they might do this or that and we never got to know them as human beings and it’s changing. There’s a lot of pioneers before me that have been working really hard on this, which I appreciate. 

Brian: Yeah, thank goodness. 

Shannon: Yeah, because, I mean, it wasn’t that long ago that people with Down syndrome weren’t even allowed in public and that’s just a crazy, crazy thought to me, because who does not benefit from knowing Quinn? Like Quinn is a bright spot in our world. But going back to that question of what do I want educators to know, I want educators to know that from the parents’ standpoint, obviously, we love all of our kids and we want to see them grow into happy, healthy adults and good humans, but there’s also the mom and dad side of us that when you approach things or tell us things, please know that there’s another human on the other side of that. And so celebrating Quinn, the things that she can do, lots of celebration. We know she can’t do things. We know she can’t write this and that, whatever, which she should be doing at the end of kindergarten but she’s not right now. She will. We do believe — in our house, we say, “Not yet. She will, it’s just not yet,” and so just knowing too that everyone can benefit from having Quinn in that classroom and it takes a little bit of extra work on your part to have that support staff coming in and out and having Quint in the classroom, but —

Brian: I think that’s the point, isn’t it?

Shannon: Right.

Brian: When you do work on something, you get better at it.

Shannon: Right, absolutely. Absolutely. Eventually, we want it to be — I don’t know if you’ve ever seen like the photos that go viral on the internet because some kid did something nice for a kid with a different ability or with Down syndrome or whatever and it goes viral and everyone’s like, “Oh, you’re so nice to that kid,” like people love that stuff. But as a parent, that kills me, because it’s like you should just always be nice to all kids.

Brian: To everybody, right. 

Shannon: Yeah, like it shouldn’t win you an award for being nice to the kid with Down syndrome as a senior, like, no, that should just be something that’s all of the time.

Billy: I like how you talked about you have these Quinn stories that you share with your students but you’re not telling them for entertainment value, you’re telling them because they’re entertaining and then there’s a lesson that goes along with it. And I really hope that Quinn’s teachers and particularly the students have Quinn stories that are followed by, “And from that, I learned this…”

Shannon: Right.

Brian: You teachers just like to squeeze learning into everything, don’t you?

Shannon: Of course. 

Brian: You got to squeeze learning into everything. 

Billy: Can’t just be for fun anymore. There’s got to be a purpose behind it. So, Shannon, we want to get you out on this. You’ve talked about some of the organizations that you support. Which organizations do you want to shout out?

Shannon: Yeah, so the first one that I want to give a huge shout out is to Jack’s Basket and Carissa runs that organization out of Roseville and she has a child with Down syndrome, his name is Jack, and she found out about the diagnosis of Jack when she gave birth to Jack and it wasn’t until a few days into having Jack that a nurse came in and celebrated Jack. Before that, it was kind of a sad, somber moment of, “I’m so sorry,” delivering that news, and now she’s taken that and once she educates doctors, nurses, hospitals, like how do you approach a diagnosis of Down syndrome? It’s not the risk of, it’s the chance of, or it’s not a negative thing that you’re going to have a child with Down syndrome, let’s look at all these amazing things, because the focus used to be a lot on the negative part of it. Your life will not be this. Your child will not be able to do this. Well, we’ve got a generation proving them all wrong right now.

Billy: That’s what Tandra Rutledge really talked about couple episodes ago, changing the language around mental health. We need to shift how we communicate those things.

Shannon: Right, absolutely. And so Jack’s Basket now, that is one of the first places, not so much in central Minnesota anymore now because the nurses and the doctors and in Minnesota all around, but Jack’s Basket might be that first celebration that a parent hears of like, “Congratulations on your child with Down syndrome. Here’s a basket to welcome this child into the world,” and I always say to my parents, because I do get to meet with the parents a lot of the times when I deliver the basket, and I’m like, “You hit the jackpot. You really did. We have so many amazing people that are now surrounding you because of this child,” and it’s a huge celebration with this basket and then connecting to resources.

Brian: I want to just shout that out. That’s jacksbasket.org, just like it sounds.

Shannon: Yep. And so if you happen to know somebody that is going to be having a child with Down syndrome, contact Carissa and we will make sure that that basket gets out to you and that family gets a huge celebration of the child that they have been blessed with. The other one that I really want to talk about, well, there’s a couple of them, but we have the Down Syndrome Diagnosis Network of Minnesota and that has amazing resources for families and also gets you connected to local groups, like we have an amazing local group in our area, we get together once a month to just share resources, like I talked about getting on the DD waiver, which is a painful, painful, painful experience, but when you have people that are supporting you behind it, you can get through it. And now that I’ve done it, now I’m helping other people get through that. And that’s really just a chance for us to get some extra services like PCA services or therapies, but it’s a daunting process. It takes a long time. And our local organization gets together in the summer for a couple of picnics where parents connect, siblings connect, kids connect. That’s that Down Syndrome Diagnosis Network of Minnesota.

Brian: And you guys can find that at dsdiagnosisnetwork.org.

Shannon: And then from there, once you do want to start getting connected, we have Rockin’ groups. So, one of the first places I was sent to is called Rockin’ Moms 2015 because that’s when Quinn was born, and that was all kids around the world that were diagnosed with Down syndrome born in that year and all of these moms from around the world could ask questions, share experiences, share stories, share tears, and we were all in the same safe place. Through those Rockin’ Moms groups, there’s heart groups, there’s GI groups, there’s lots of different groups that branch off from there. And then, in September every year, we have a Rockin’ Moms Conference where we go — to this year we’re going to Denver, two years ago, we were in Nashville. It started off a few years ago with just a couple of moms getting together and when we were in Nashville, I think there were 700 or 800 moms that have kids with Down syndrome that were around five and under. And let me tell you about a party.

Brian: For as hard as y all work, you deserve it. 

Billy: What happens in Nashville stays in Nashville.

Shannon: That’s pretty much the motto of the whole weekend. It’s amazing how many moms, put them all in one place and they get to share stories, tears, but without a lot of words, because we’re all in the same place, we’re all doing the same thing, we’re all working our asses off for our kids. And then you put them all in a place to learn, to advocate, and then to party. I mean, it is one heck of a party, I will say that.

Billy: I’ll take the invitation. 

Shannon: Yeah. Not allowed. And then from there comes off the Rockin’ Siblings groups, there’s Rockin’ Dads groups, but it’s really important and I’m working on a thing right now for Central Minnesota to connect Rockin’ Siblings because it is a different world to be in when you are a sibling of a child with Down syndrome. Your life is just looks different. It’s not bad different, it’s just different. And so getting those — Ady’s been connected quite a few times with some siblings and just them sharing some stories with each other and then that laughter that comes from sharing those stories of like, “You’re not alone in all of these things and life is great,” but there’s also some hard things that come with having a sibling with Down Syndrome. Ady has a lot more responsibility. Having a sibling with Down syndrome definitely has some different experiences that come with it. and when you connect with other people, we know how important connection is in so many different spots in our life, and when you can connect with people or with siblings that have kind of the similar experiences, those connections can be really deep.

Billy: Well, Shannon, your passion for the work that you do as an educator, as a mom has shone through in this whole interview today and we just want to thank you so much for bringing that energy to this space and sharing your story with our listeners.

Shannon: Well, thanks so much for having me. I love sharing my story to anybody that wants to listen.

Billy: And how can people get in contact with you? 

Shannon: So you can just search me up on Facebook and send me a message if you want to go that way. You can go through the Instagram account. Otherwise, I can put my email address on there too if you want to get ahold of me that way.

Billy: And we’ll include all the information including the links to the organizations and Quinn’s Instagram page in our show notes so be sure that you look through those. Shannon, it’s so wonderful to see you, my old friend. 

Shannon: Yeah, thanks. Thanks for having me. 

Billy: We’re not old. 

Shannon: No, we’re not old. 

Billy: Like my dad says, that gray hair doesn’t mean you’re extinguished, it means that you’re distinguished.

Shannon: Oh, I like that.

Billy: Yeah, yeah, so we’ll ride off in the sunset with that. So, for Shannon, for Brian, this is Billy, thank you for listening to The Mindful Midlife Crisis. May you feel happy, healthy, and loved. Take care, friends.

Billy: Welcome to The Mindful Midlife Crisis. I’m your host, Billy, and, as always, I’m joined by my good friend, Brian on the Bass. Brian, how you doing over there, man?

Brian: I’m great, thank you very much. How are you?

Billy: No, you got to stay present.

Brian: Well, you didn’t ask me what my word of the day was.

Billy: No, I never do, I always say how you doing.

Brian: Oh, I’m doing fine. Thanks. 

Billy: We got to start that over.

Brian: No, I’m not going to do it your way. No —

Billy: You bastard.

Brian: No.

Billy: You better start —

Brian: No. I refuse.

Billy: Okay —

Brian: You going to come at me? I’ll come back at you. Let’s go.

Billy: Okay, all right, we’ll just start it over but we’re going to keep that at the end. That’s hilarious. Oh shit. Okay. Here we go.