This is how we make it through

In an article for the New York Times, Andrew Solomon wrote, “The fact that you wouldn’t have chosen something doesn't mean you can't find joyful meaning in it.”

In this episode, hosts Amanda Morin and Bob Cunningham hear from families about the (sometimes unexpected) ways joy creeps into everyday life — even on the most challenging days.

From learning to ride a bike (as an adult!) to making fart noises at the dinner table, this is how families with kids who learn and think differently make it through.

Listen in. Then subscribe to In It on iTunes, Spotify, Stitcher, or wherever you listen to podcasts.

Episode transcript

Amanda: Hi. I'm Amanda Morin, a writer and in-house expert for Understood.org and a parent to kids who learn differently.

Bob: And I'm Bob Cunningham. I'm a career educator and a parent. And I'm the executive director for learning development at Understood.

Amanda: And we are "In It."

Bob: This is a podcast from Understood. On this show, we hear from parents and caregivers and sometimes kids. And we'll offer support and advice for families whose kids are struggling with reading, math, focus, and other learning and thinking differences.

Amanda: Today, we're talking about finding joy and beauty in everyday life — while also managing the challenges that come with raising kids who learn differently. The idea for this episode started with an article I read in the New York Times, by Andrew Solomon. His name may be familiar. He writes a lot about families that are different in some way. This article was about the work we as a society need to do to overcome these sort of pervasive negative and kind of uninformed views of disability.

Amanda: And there was one line in it that I especially love as a parent of kids with autism and ADHD. Solomon wrote, "The fact that you wouldn't have chosen something doesn't mean you can't find joyful meaning in it." And boy, did that resonate with me.

Amanda: It's nice to start talking about the great things about having kids, regardless of whether they learn anything differently. Because a lot of the time we're talking about what we find difficult, and to be able to talk about what's really just joyous in having kids, I think, is something every parent probably should be looking at, at some point or another. But first, Bob, tell me what "joy" means to you.

Bob: So for me, "joy" is that little bit of overwhelming feeling you get, right? So it goes beyond just being happy or being excited. It's that kind of sense of being overwhelmed by what is happening that makes you feel so happy.

Amanda: I, you know, I think your definition of "joy" is very similar to mine. I don't think of it as sort of that everyday contentment that, you know, things are going well. It's that moment that makes you like laugh out loud.

So once we started talking about this, I was reminded of a family my kids and I got to hang out with over the summer, Lindsay and Kevin. And we're just going to use their first names today. They're raising two kids who learn and think differently. And when I found they and their family were going to be passing through my town in Maine, I suggested we meet up. And we all went out to lunch, and our time together was — it just made a really powerful impression on me.

First of all, our two boys are very close in age, never had met, and they were just joyous together. And then there was this one moment after lunch when Kevin and his son Sam just started skipping down the street like they didn't have a care in the world. Kevin, do you remember skipping down the street like that?

Kevin: I do. Yeah. And we'd just had a good lunch and we were — he was feeling silly. And I think what's important to say about that is that he used to not be able to skip. You know, he wears braces on his feet. And that was a challenge for him to get to the point where even could skip. So when he wants to skip now, I'm there. I want to skip with him. I know how hard he worked to get there and how much fun it is for him. So I take those chances whenever I get them.

Amanda: Sam is 8 years old. His sister Maggie is 12. When asked to describe Maggie, Lindsay says right off that she is ferociously brave.

Lindsay: She is the person who will do parasailing 400 feet in the air with my mom.

Amanda: Maggie loves art, theater, soccer, and science. Lindsay says she has what's called a language-based learning disability.

Lindsay: So for her, her working memory and her short-term memory are smaller than other kids. And so for her what that means is it's sometimes hard for her to comprehend or to take multi-step directions. And sometimes it's really hard for her to express herself.

Amanda: Maggie's brother Sam has a different personality. Lindsay says he's super silly, very emotionally expressive, and all heart.

Lindsay: People at school call him the mayor, because he goes around and says hi to everybody.

Amanda: Sam has some difficulty with reading like his sister. But most of his challenges are physical. He struggles more with motor skills. Kevin and Lindsay talk about their kids with so much warmth and humor and pride, but they say it took them some work to get there.

Both Kevin and Lindsay loved school when they were little. And success came easily to them, so they figured their kids would be the same. When Maggie's kindergarten teacher first told them she thought there was some sort of problem, they were floored.

Kevin: We were blindsided with that news in kindergarten and it really — really took us back. You know, there'd never been any signs in preschool. The teachers always said, "Oh, she's such a delight. She's got a great attitude. She's doing just great." They didn't catch any of this stuff because she put on such a brave face. And so it really — it surprised us. And also, we didn't know how to deal with it, because it was not something that we ourselves had been through, right?

Amanda: What was it to you when it looked like school wasn't going to be as easy for her as it had been for you?

Kevin: It was definitely disappointing. I mean, I mean, because, you know, we had a certain — you know when you have kids, you have a certain vision of how things are going to go. And it's always rosy and optimistic, right? But parenthood is a series of steps where you realize that your kids are like everyone else. So they're not perfect. And we had steps like this before. Both Maggie and Sam have vision problems. So they had to get glasses when they were really young. And that was our first moment of, oh, wait, our kids aren't perfect, you know? And it seems like such a stupid thing now.

But at the time, just Maggie getting glasses was heartbreaking for us. Now it's a tiny thing. We don't even think about it, you know. The news in kindergarten was an even bigger blow to that idea that this wasn't the path that we'd imagined for our kids. First Maggie, then — and then Sam later on. And yet, you know, that's the path they're on. And you can get upset that it's not the perfect way it's gonna be. Or you can realize this is who your kid is and you've got to meet them where they are.

Amanda: It sounds like they've redefined your expectations of what parenting would be. Does that sound accurate?

Lindsay: A hundred percent, I think in two ways. I was thinking about this idea of joy. And I think, you know, we live in a university town that sends tons of kids to Ivy League colleges. And, you know, the conversations at the school board meeting and around town are just about how stressed our kids are.

And there's this great author that calls it the checklisted childhood. Like we're doing everything we can to sort of build our kids' resumes so they get into the perfect college and get the perfect job. So I would say one of the most beautiful ways, and one of the most freeing things that having the kids we have did was — it kind of threw all of that out the window. Like I feel very free that our kids do not have to compete with other kids. And that is not saying we're lowering our expectations at all for our kids. It's saying, what we're gonna do is really figure out the kids we have and what's going to make them thrive.

And so it doesn't matter if so-and-so is going to college and so-and-so is going on to do this. In some way, that was like so relieving to not even have to be a part of that conversation or to feel influenced by it. Because I think we learn early on like we have to know the kids we have, and the way that they're going to be the most successful is really figuring out what's right for them.

Amanda: But parenting their kids hasn't just been a matter of adjusting expectations. It's also allowed for some incredible growth. Like when Lindsay saw Maggie struggling to learn how to ride a bike.

Lindsay: I never learned how to ride a bike.

Lindsay: And the reason I never learned how to ride a bike was not for lack of trying. Or my parents trying. So we did the traditional thing where my father held on to the back seat of my bike. And, you know, what's supposed to happen is you're supposed to be riding and all of a sudden your dad lets go in you're supposed to have this great moment where you realize you're doing it. And what actually happened was I just kept falling and falling and falling. And I did not like to fail as a kid. So I decided I was not going to ride a bike because my father was clearly sabotaging me, which doesn't make sense now.

But anyway, fast-forward to Maggie learning how to ride a bike. I'm 38 years old. She's trying so hard. And, you know, I feel like such a hypocrite because I'm telling — and this is so true of so many things in her life where I'm pushing her to be brave and bold and do all these things when I'm not really doing them myself. So she and I basically made a deal that if she learned how to ride a bike without me holding on to it, that I would go out, I would buy a bike, and I would learn to ride.

Lindsay: And so that's exactly what we did. It was not pretty. Her elementary school had a big hill that goes down sort of, a street that goes down a big hill to her school. And so I used to make her — she really wanted to ride bikes to school — so I would make her go to school a half an hour early because I didn't want any of the adults to see me flying down the hill on a bike, screaming and terrified and potentially falling. So we would go early until I built up the confidence to just be able to ride normally. And now we now we ride all the time.

Lindsay: And so I'm really grateful for her that, you know, I can't tell her to be brave and tell her to keep trying when it's hard if I don't do it myself.

Bob: We heard from some of you about how you found joy raising kids with differences. Here's Beth.

Beth: Patrick was born with Down syndrome, but he was also born with a heart defect and he had to be — have open heart surgery at 9 weeks old. And I had two other older children, Jack and Mary Kate. But I wasn't sure if Patrick was my last child or not. And so every part of his babyhood felt so special. And I savored it. And I felt gifted with that slow unfolding. It felt like those slow-motion videos that you see of a flower unfolding.

Beth: In fact, I remember so clearly one time watching him spend an entire day figuring out how to open a kitchen cupboard. And as he was doing that, I thought, you know, Jack and Mary Kate just figured this out so quickly. I never even noticed when they figured it out. They — I mean, it was like I opened my eyes and now they know how to open the cupboard. Here, I'm watching you figure it out all day long. And by the end of the day, he figured it out. And it was such a special moment to get to see him really figuring these things out.

Beth: I wasn't upset with him that it took him longer. I just thought it was cool that I could notice it.

Bob: So I can remember a mom talking to me at length about her son. And her son had a lot of difficulty with a lot of things, especially around school, and that transferred into a lot of difficulty with a lot of things at home.

Bob: And so one of the things that he started to do when he was kind of a young teenager is he really jumped into cooking. Fortunately for him, his mom and dad realized like, oh, this is really turning him on. He's really excited about this, right? So they encouraged it. They started to take him places to learn more about cooking. And the mom was, you know, talking to me about this over a period of months and then over a period of a year and stuff.

And I can vividly remember kind of the last conversation I had with her about it. And it had entirely shifted from how into cooking her son became, to how into cooking she became. And this was somebody who never really liked to cook and was a very busy executive. And I remember her saying in the end, if it hadn't been for how excited he got, I never would have figured out that I actually love cooking.

Amanda: Oh, that's so cool. So like she found joy through him finding his passion.

Bob: Yeah.

Amanda: And you know, and I think that's so important because we need to find those moments of joy, like whether it's from our kids, whether it's in our kids, or those kinds of things. And we definitely heard that from Lindsay and Kevin. But I don't want to give the impression that Lindsay and Kevin are superhuman and always patient and loving and understanding parents, because that's setting the bar pretty high. And they are the first to tell you that it's not moments of beauty and grace all day, every day.

Kevin: I remember, we had a — we were having dinner one time, and it was one of those nights where both kids were acting up for whatever reason. And I'm not even sure it had anything to do with their differences. But it's just, you know, it's like a stressful night. We'd all had kind of a crappy day and we were all in a snippy mood. It was a very serious, tense moment.

And Lindsay just stopped. She was about to lose it. And she put her mouth to her upper forearm and made a fart noise. And it was hysterical. It just cut through the tension of the table. And we all just started howling. It was just stupid and silly. And it just brought us all back to: What are we upset about? What are we doing here? They're kids! Have fun with them.

Amanda: Such good advice, right? They're kids.

Bob: Very good advice. And you know, we heard from another parent, Michelle, whose 17-year-old son Avi has autism. Michelle tells us she's gotten a lot of joy out of raising Avi, and she actually credits him with making his three siblings kinder people and with bringing lots of music and dancing into the house. But that doesn't mean she never struggles.

Michelle: You know, it's an interesting balancing act, because I want to allow myself the permission to be human and to say sometimes this is really hard because sometimes it is really hard. And I feel like not allowing myself to understand that — and experiencing that — is not fair to myself, you know? And I don't want it to get pent up and turn into resentment.

So usually, like in those moments when I feel that way, my husband or I — we're very good at bouncing off of each other. So neither one of us are allowed to be in one of those slumps at the same time.

Michelle: If I'm in a slump first, he's not allowed to be and vice versa. That's number one. Number two is that we'll often remind ourselves of something that Avi has said or done that will just turn us into laughing within minutes. So somehow we try to bring in some of what who Avi is and remembering that great sense of humor and remembering that great, fun-loving, musical, happy kid. And that kind of helps bring us up.

And I always try to remind myself that I think Avi's biggest problem with autism is us — meaning we are working on trying to fit him into a world that he doesn't naturally fit into.

Michelle: But if he's not being pushed to fit into that world that he doesn't actually fit into and he is being allowed to play, dance, and sing and do what he wants, and it doesn't matter if he does that in a grocery store, because we're not worried about appropriateness, he's fine and happy.

Michelle: You know, sometimes trying to remind myself about that happy kid, and that focus and whatever that issue is that's bothering me at the moment, can often usually just pull me out.

Bob: She's so right about the grocery store. And, you know, when you have kids with stuff going on, other people think that's difficult for you or you need pity. Kevin, he really bristles at that notion.

Kevin: When Maggie gets down about herself and the challenges she faces, we've actually pulled over the car one time and be like, look, all your friends have something to deal with, too. That one is emotionally fragile and cries on the soccer field anytime the ball gets taken from her. That one, you know, can't focus on this and that.

Every kid is imperfect, right? And we just happen to know the way in which ours are imperfect. That doesn't mean they're broken or bad or wrong.

Kevin: It's just that they're different, right? Every kid is different. And so there are these parents who I think, look at you like, oh, well, you must be dealing with it. But you're dealing with something else. I know that your kids have some issues, too. And if you don't know it yet, it's coming at some point, right?

Amanda: Right.

Kevin: Don't look at me. Look at your kids.

Bob: So that's Kevin's message to folks who aren't raising kids who learn and think differently.

Amanda: And here's Lindsay's message for those who are: That joy you're cultivating isn't just important for you.

Lindsay: I think if we send them the message that there isn't room for joy or that this is so hard or such a life sentence, like whether we realize it or not, our kids are picking up on that. And, you know, I think they're working harder than most adults we know, because they're grappling with so much.

And so, you know, I think it's key to their survival — having that belief and being able to create those moments. You know, I think one of the ways that I've tried to keep my perspective on this is like dealing with my own stuff, getting help. Talking to other parents, finding a community of parents and kids who learn and think differently so that I'm not processing that stuff with them. That's not fair to them.

I think, you know, our job — I think my parents were the ones who sort of said your job from now on is to be a detective and to watch them and to figure out what they're good at and figure out what brings them alive and to lean in to that.

Lindsay: And so I guess my only closing thought is just how important our job is as parents to make those moments of joy and to make things right and to sort of be detectives and figure out what gives them joy and to do more of that.

Amanda: Lindsay makes such a good point about the need to deal with your own stuff, right?

Bob: For sure. And it's not only our own stuff. It's also kind of just the way we expect things to go, right? And we expect things to go a certain way because that's how it went for us, right? That's how it went for us when we were kids. That's how it went for our other child. That's how it went for the kids we watched our friends raise — that sort of stuff.

So you get your ideas about the way it should go. It's not going to go the way you expected it to go, necessarily. I think we have as parents a lot of influence on it. But if you go into it thinking you're gonna control it, you're way off the mark.

Amanda: And I think we have less influence than we actually think we do sometimes. I find myself having those moments where I'm like, wait a minute, why did I say no? Why am I not letting you do this thing that it doesn't matter if you do or not? It's these things as parents, we have sort of let go off and then just like finding the humor in it.

Bob: The other thing is, look, you know, I have to remember, my wife has to remember, all of our listeners have to remember: Parenting is a long game, right? It's what happens over time. And each moment is far less important than you think it might be.

So if something doesn't go well or you don't react the way you think you should or you have, you know, spent the last couple years really focusing on what's wrong and what's a problem and how can we help and what can we do better, it's never too late to sort of say, hey, let's start. You know, every week we're going to talk about one thing that was an experience of joy for all of us.

Amanda: You've been listening to "In It," a podcast from Understood. Our website is Understood.org, where you can find all sorts of free resources for people raising kids who learn and think differently.

Bob: We also really want to hear what you think of our show. Go to u.org/podcast to share your thoughts and also to find resources. That's the letter "U" as in Understood, dot O R G slash podcast.

Amanda: You can also rate and review us on Apple Podcast, iTunes, Spotify — wherever you download your podcasts from. It's a great way to let other people know about "In It." And if you like what you heard today, please tell somebody about it. Send it to somebody who needs to find a little joy in raising their child. Or just send a link to your child's teacher.

Bob: You can also subscribe to "In It" on Apple Podcasts. Follow us on Spotify or keep up with us however you take your podcasts. Between episodes, you can find Understood on Facebook, Instagram, Pinterest, or YouTube. And you can visit our website, U — that's the letter "U" — dot o r g.

Bob: Our show is produced by Julie Subrin and Sara Ivry. Mike Errico wrote our theme music, and Laura Kusnyer is our executive director of editorial content.

Amanda: Thanks for being in it with us.

Bob: "In It" is a production of Understood.