How to build a culture of inclusivity at home with Heather Avis

 

00:00:00    Alyssa

You're listening to Voices of Your Village. And today we get to hang out with my pal Heather Avis from the Lucky Few Foundation. Maybe you follow The Lucky Few Official on Instagram. Fantastic follow. Heather wrote one of my absolute favorite children's books. It's called Everyone Belongs. And I honestly, I cannot read it without crying. It's so good.  It's one of my favorite gifts to give at kids' birthday parties. And today we get to dive in with her on how to build a culture of inclusivity at home. I love Heather's approach and work and influence in this space. And it was truly a dream to get to sit down and chat with her and I'm so excited to bring this conversation to you. All right folks. Let's dive in.

 

00:02:00    Alyssa

Hey there. I'm Alyssa Blask Campbell. I'm a mom with a Master's degree in Early Childhood Education and co-creator of the Collaborative Emotion Processing method. I'm here to walk alongside you through the messy, vulnerable parts of being humans, raising other humans with deep thoughts and actionable tips. Let's dive in together. 

 

00:02:20    Alyssa

Hello, everyone, and welcome back to Voices of Your Village. Today I get to hang out with my friend Heather. Heather. I started following you on Instagram at The Lucky Few. I think it's The Lucky Few, the official name, a while ago, and then this book came out. You wrote the book Everyone Belongs, and I 1000% fell in love with it. And it's now like, we have two copies in my household because I have one on hand in case we're invited to a birthday party or something comes up. And I'm like, a kid needs this. I always just keep an extra copy of it. Actually, my agent the other day was talking about my book coming out this fall, and she was like, the rule is you always keep two copies. One that's yours, that has your notes in it, and one just in case you need to give a copy out to someone. And I feel like that's what I do. But with everyone belongs your book. So thank you so much for writing it. Heather is a New York Times bestselling author and podcaster and down syndrome advocate working to create a more inclusive world where everyone belongs. And you sure are working on it, sister. How are you? 

 

00:03:37    Heather 

It's a job. Like, can I make jewelry? No, I'm just kidding, but I'm sure you can relate to that sometimes 100%. What if I made coffee for a living? Can I make coffee? 

 

00:03:47    Alyssa

Or like, my husband has a job that he goes to and then leaves and doesn't think about after. And I'm like, wow, how cool is that? 

 

00:03:54    Heather 

Yeah. Tell me more. 

 

00:03:57    Alyssa

Help me understand. Can you share with folks what is The Lucky Few Foundation? What does that mean? 

 

00:04:04    Heather 

Yeah. So The Lucky Few is our overarching business. When I say our, my husband and I run this whole thing together. I'm going to take you back a tiny bit to have three kids. My oldest is 14, has down syndrome. I have an eleven year old and a nine year old who also has down syndrome. My eleven year old has no disabilities. And when my oldest daughter came home with down syndrome, very quickly I realized how we were the only people in a space with down with she was the only person in a space with down syndrome. I wasn't with their parents in playgroups, at the grocery store, at the park, wherever. And I would feel this overwhelming sense of privilege for that. Like, you're the only one and you’re mine, oh my gosh, I get this kid, she's incredible. And then also understanding that prior to falling in love with her, there was a narrative around there was and is a narrative around down syndrome that is negative and devastating and all of these horrible ideas that's this narrative that's falsely being told about person with down syndrome. And I felt so lucky. So I started saying, there's a few of us who have someone with down love, someone with down syndrome, and those of us who do are the lucky few. And then just putting that into the world, and it took off in a sense, like wildfire within the down syndrome community. It's hard now to find anywhere in the down syndrome community that's not familiar with the lucky few. The phrase, they don't necessarily know me, but they have attached that phrase or the idea of luck being attached to down syndrome. So the lucky few went entered into the world through social media. Like, I guess a lot of good things do, we'll just stick to the good side. And then I was a stay at home mom, and I got an opportunity and I started blogging. My daughter was born in 2008, and that's right around the time that every mother started a blog. And then I had an agent reach out to me, a literary agent reach out and say, hey, would you ever want to turn your story into a book? And that turned into a long conversation, and more babies came home in the meantime. And then I ended up writing a book and calling it The Lucky Few. So it's been this unfolding of that. Then once I had my first book in the world, there were opportunities, doors opening to travel and speak. And I was staying home full time and my husband was working full time. And we got to a point where something had to give and my husband actually quit his job and came on full time with The Lucky Few. So we started an LLC. And then the last couple of years, that has also then rolled over into a foundation where we are committed to telling the whole true big story of down syndrome by highlighting people with down syndrome and those who love them and giving them a platform to share their stories in a true and beautiful way. 

 

00:06:53    Alyssa

I love that. And what does that look like, giving them a platform? 

 

00:06:58    Heather 

So we gather the stories in a storytelling weekend. Last year, we went on a storytelling tour for five weeks. My husband and I and our three children traveled around to five different cities and in a five week span got about 250 stories. And so it looks like beautiful photography and 400 words or less. Because we live in a world in which it's harder, it's hard for a consumer to consume more than 400 words at a time. 

 

00:07:23    Alyssa

Sure. 

 

00:07:24    Heather 

And we're just asking people. It's focused around a person with down syndrome and then whoever is in their sphere of influence, essentially, that wants to share. So it's parents and grandparents and siblings and coaches and teachers and friends and coworkers and employers all talking about sharing a little story about what they love about this person with down syndrome. And I think that I have found that when we are able to see ourselves in something, it offers us so much...

 

00:07:58    Alyssa

Humanity. 

 

00:07:59    Heather 

Humanity. It gives us the ability to lean into it instead of push away from it, even if it feels scary and the unknown is scary. And if you don't already love someone with down syndrome and you find out you're going to have someone with down syndrome in your life, whether it's a parent or a grandparent or an educator or a friend, whatever, that's an unknown that feels scary. And so if you see yourself in the story, right, if you can find yourself in that narrative, then there's more curiosity, I think, than there is fear or a little more hope. And you can see in each other's in our stories. When we share our stories and we hear stories, it's that humanity piece. It's seeing like, wait a second, you are human, like I am human. And what I think we all want at the end of the day is to be seen and known and connected to one another, down syndrome or not, right? 

 

00:08:45    Alyssa

100%. Yeah. And I think that that's the through line that I see in your books. So you wrote The Lucky Few. You wrote Different. And you wrote Everyone Belongs. Am I leaving anything out? 

 

00:08:58    Heather 

I had a second book after The Lucky Few in 2019, a book called Scoot Over and Make Some Room, which is this one is an adult nonfiction. 

 

00:09:06    Alyssa

Okay, cool! Yeah. So that's the through line, though, that I see in your work is it's making it so that we all are seen and valued and connected. And I think you're absolutely right that there's this idea that we construct based off of our social context and narratives around what's supposed to be right. 

 

00:09:36    Heather 

Yes. 

 

00:09:37    Alyssa

And just the other day, Sage was getting dressed, and he was putting his arms, we were putting on his winter jacket, and I was like, all right, put one arm in. Put your other arm in. And he goes two arms. And I was like, yeah, you have two arms. And then I said, Some people have two arms, some people have one arm, some people have no arms. And he was like, no arms? And I was like, right. But I think if we aren't exposed to that, right now in his life, everyone he's been exposed to has two arms. 

 

00:10:09    Heather 

Right. 

 

00:10:09    Alyssa

And so he has a narrative around what it is to be human and how many arms you have, whether he's aware of it or not. And it isn't until we're exposed to and acknowledge difference that I think we can even acknowledge the narratives we have around them. 

 

00:10:29    Heather 

Oh, absolutely. You can't know what you don't know. Yeah. And that's why there's a lot of grace for it. But also, I think in 2023, there's so many opportunities for knowing something. Right. And it takes a little digging, but it takes their kids asking questions. I started as a writer, as an author with adults, and I switched over to children's book because I just think that our kids approach curiosity in a way that it's void of judgment. I don't know at what age or what point in life you might know more about this. It shifts over to judgment. I know by fifth grade for sure.

 

00:11:08    Alyssa

As you live it now.

 

00:11:11    Heather 

However, kids just want to know things in a way that is curious. And I think we as parents blow it constantly. We're the ones that are blowing it for them. But if we have that awareness, then we can have those conversations. That's a brilliant conversation to have with your son, the fact that that's a conversation parents are having. I don't think very many are. I think you're a little bit of an exception to the rule. But it's happening more and more. 

 

00:11:39    Alyssa

I think it's happening way more and more. Yeah. 

 

00:11:41    Heather 

And I think that it just takes away all this fear and stigma from somebody who's different than you. Because the reality is, at some point, we're going to be the different person in the room. 

 

00:11:51    Alyssa

Correct. 

 

00:11:52    Heather 

And how do we get into the room as a different person and feel comfortable in those differences? Or feel okay or even feel okay in the discomfort as something to push through and walk towards instead of shy away. I don't think the discomfort is bad. It's what are we going to do with it? Are we going to let that build walls around us so that we don't have to feel that feeling, which is a falsity because it's going to happen again? Or are we going to be like, okay, I have a foundation in which I understand different isn't bad, and so I have this discomfort. Okay, that's also not bad. I have it because someone's different. Now if I get to know the thing that's different, it's no longer unknown, and it's no longer uncomfortable. And these are the tools that we can give our kids 100% that really do change narratives, really do create belonging. 

 

00:12:44    Alyssa

What I think is so powerful in what you're just saying is when we were creating the CEP Method, that's, like, what my work is based off of research across the US. We have five phases of emotion processing in there, and phase three is security in your feelings. And this is the one that I think is the hardest for us as adults and that we then this becomes cyclical, where it becomes harder for kids as well. And it's that ability to say discomfort isn't bad. I'm safe to be in discomfort. I'm safe to be in disappointment. I'm safe to be in fear. I'm safe to be in the unknown. I'm safe to be in there. That's not inherently bad. It doesn't mean that I'm not safe because something feels uncomfortable. And I think that that's so hard to do and such powerful work to teach our kids how to do, to model it, to teach them. What does it look like to be in discomfort and say, I'm safe here? 

 

00:13:48    Heather 

Have you found in all your research with that, that it is something that is more accessible for kids than adults?

 

00:14:07    Heather 

Yes. Kids are really good at allowing their feelings and being in them. It's when they learn that they're not supposed to be in them that we start to see things like anxiety pickup, et cetera, where it's like quicksand. Like, you don't see a one year old, typically, who has anxiety outside of maybe separation anxiety, where they're really saying, I don't feel safe internally, but they're not like, oh, I feel embarrassed this thing happened, and now I'm anxious about feeling embarrassed. That becomes something they learn. You're not supposed to feel embarrassed. You're supposed to hide that's shameworthy, whatever. And then they try to make it go away, and they end up, it's like quicksand. The more you try to get out, the deeper you go into it. For us as adults, we have this whole long list of emotions we can tell you that we're not supposed to feel or be in, and we try like hell to get out of them. Or stay away from them. 

 

00:15:06    Heather 

Yeah. Avoid them. Ignore them. Yeah. Sleep them under the rug. 

 

00:15:11    Alyssa

Correct. And we're so good at that. And what it has perpetuated is a cycle of anxiety where we're like, oh, shoot, I'm feeling another thing I'm not supposed to feel. I'm feeling one of those, quote, bad feelings, and I need to make it go away. I'm not supposed to feel disappointed. I'm not supposed to feel angry. I just had so many comments on a post the other day about anger and how we shouldn't be telling kids they should feel angry. Like, that's unhealthy and what I heard, and I just want to give this human just a big hug and be like, my friend. You're allowed to be angry too. 

 

00:15:44    Heather 

Yeah. As you're sharing all that, it's interesting thinking about disability and the narrative around that, because it is we are told disability is bad from the second you learn that someone is pregnant. I don't care what gender I have, so long as...or even that body. Normatively, ten fingers, ten toes. Right. So then wait a second. What happens if your kid isn't born with ten fingers, ten toes? What happens if your kid is born with an extra chromosome? What happens if your kid is born without limbs? What happens wait, whoa, whoa. What are we doing? And it is let's avoid this at all costs. This is negative. This is a stigma. This is uncomfortable. And then we're just putting that into well, we're putting that into our kids. Very subliminally. But also, we're living in a world in which systemically structures are built upon ableism this idea that disabled people are bad or able bodied, neurotypical people are the best kind of people to be. And I think what's happening is we're just feeling more and more isolated as we separate ourselves from disabled people or from people who aren't like us. We're losing that connection. And the thing I say, that my daughter Mason, so I have two kids with down syndrome, but Mason was my game changer in that she came first. She changed everything for me. She changed the game for me. And with Mason, the gift that she has had as a human with down syndrome is an invitation to stepping into seeing the intrinsic value and worth in every human. It's an invitation, though. It's not a given, right? You have to accept it. You have to accept the invitation. That is who Mason is existing in the world. She is an invitation to everyone who interacts with her to say, yes, I see you as intrinsically good and valuable because you have breath in your lungs and heart beating your chest. And as soon as we say that about her and believe it about her, it reflects like it reflects back on me. So if I'm going to believe it about Mason, then I have to believe it about me. And that invitation to say to myself, who you are as you are is enough. Like, your intrinsic value and worth, you have that just by waking up in the morning. It's incredibly liberating, and I think it's what we're longing for in this society of, like, hustle hustle, do more, be more, made for more. All the, all of it. 

 

00:18:20    Alyssa

Yeah. Legit. 

 

00:18:21    Heather 

We're all drowning. 

 

00:18:22    Alyssa

We are drowning in comparison. And, I'm just thinking of your book. I have not for the record, I have not once made it through your whole book, Everyone belongs without crying because what it brings up, that's not a lie. Because what it brings up for me is that exact thing that, like, who you are right now is enough. And if there is one sentence I should read every day for the rest of my life, it's that. Who you are today is enough and that there isn't a single achievement that will. But this is what we do culturally, right, that we're like, well, these I was just having a conversation with somebody the other day, and I was just listening. At the very beginning, they were explaining why the story they were about to tell me was credible. Right. They didn't realize they were doing this, but they were outlining who this person is and all their accolades and their achievements and whatever, and then went into the story, and I was like, oh. And it was just that glimpse of, like, this is all around us. Of, like, there are certain things that you might do or achieve that raise your value or worth within our culture and within many cultures, and the gift of, like, if you don't produce a single thing and you just exist, that's enough, and you belong here. Oh, my God. Yeah. It makes me cry every time because it is the reminder of comparison that I need. And I think when we surround ourselves only with humans who are neurotypical, able bodied, et cetera, then I'm supposed to be all the things they are, too. Whatever they can do, I should be able to do just as well. And I think exposing ourselves to folks who, whether it's art, disabled or practice differently religion wise or look different than we do or have different family makeups than we do, I think the difference is a key to breaking down the comparison barrier, because we get to notice everybody's doing life differently. And that's okay. 

 

00:20:40    Heather 

Yeah. And that's great. It's more than okay. This is what makes it good that we're all doing things differently and we get to learn alongside one another and our differences. I think it's great. Yeah. 

 

00:20:55    Alyssa

And we don't have to do it all the things. 

 

00:20:58    Heather 

No, we don't have to do all the things. 

 

00:21:04    Alyssa

Have you been scrolling the Internet? And there's all these tools for calming your child and how to regulate and whatever, and you try them and your child just gets amped up or that doesn't work. Or you find yourself in these cycles where it's like epic meltdown. Try to come back from it and you just feel like you're putting out fires all day long. If this is you, you aren't alone. And we collaborated with an Occupational Therapist to create our Sensory Profile quiz. This is going to help you learn about what helps your child regulate what's happening in their unique nervous system. We are all different and figuring out what you're sensitive to or what helps you regulate is the key for actually doing this work, for getting to a regulated state, for having tools, for calming down, for having tools for regulation. Head on over to www.seedquiz.com to take the quiz for free. You can take it as many times as you like for as many humans as you'd like, and we will deliver results right to your inbox to get you kick started on this journey. Seedquiz.com.  

 

00:22:23    Heather 

And I think about my son August, and how without them, I would have missed it. I really do have to give them credit because I think of how I am even now, because I do social media influencer work, and I'm in the public eye in its own small ways that I am. And I am prone to that. I'm not doing it. It's not enough. 

 

00:22:45    Alyssa

Same.

 

00:22:45    Heather 

Because and you're about to put a book in the world. There are jobs in which it's like literally a number tells me yes or no. 

 

00:22:53    Alyssa

Correct. 

 

00:22:55    Heather 

Except let's say that there was this number that you wanted to sell 150,000 books, which just listeners. So, you know, this is a rarity in the book world. Very few books sell this many books. And then you hit that. I guarantee you that person is unsatisfied. 

 

00:23:08    Alyssa

I've never hit a goal and been like, oh gosh, I feel so much better now. Never. I've moved the target. 

 

00:23:13    Heather 

Totally. And the people who are making like, you're telling the story of the person who had that story that they had to tell you all the accolades or whatever before telling the story. That's the thing. That's the trick about it is you're never going to be like, oh, one more thing. So then we just are running all those, like we're running the rat race or climb the ladder or whatever it is. It's this trick ladder. There's no top rung. And in the meantime, we're leaving everyone behind who can't ever even make it to the step, to the first step. And then you've got Mason, who's like, here I am as I am. Hey, guys. And then the only thing in her that the thing that's like driving her at all to be more or whatever, is outside sources. She's pretty dang content with who she is, and she's going to meet you and she's going to be like, oh, there you are. Cool. Aside from like, Beyonce. I think she'd be pumped to meet Beyonce and be like, it's Beyonce. But for the most part, she'd also be really excited to hang out with the kid in her theater class, maybe equally so. She's just not someone who is, how would I say this? A very poor way of explaining it. She's not lining people up in category. 

 

00:24:32    Alyssa

Driven by that extrinsic motivation of if I'm connected to you, then I will feel valued. 

 

00:24:38    Heather 

Yes. And so if I didn't have that invitation, if I didn't step into the invitation of Mason, I know I would be that person. And I already am having a hard time in that space with living with these kids who keep me tethered to the truth. And if I didn't have that, I would be so miserable. I know I would. But I'd be continuing to do more and more and more and more, meet the person, get in the room, get the sponsor, get the whatever, blah, blah, blah, blah, blah. And let's say this, too. Working to be your best self, to put your best work into the world, it's not a bad thing, but it's a really fine line. Or this gray space between being your best self and being what other people think you should be.

 

00:25:25    Alyssa

Intrinsic versus extrinsic motivation. 

 

00:25:29    Heather 

Totally. 

 

00:25:32    Alyssa

And I think, Gosh, I'm jealous of Mason's wholeness. Sounds so lovely. And that's fostered that's something we learn because we've been taught that we are valued just as we are, and that there isn't a grade on a test, a job we could get, a college we could get into, a shot we could hit in a game. Like there isn't a single thing that would increase our value to our secure attachment caregivers. That's how we get to be Mason. And you cultivated that. So she's given you a gift. You've also given her many. 

 

00:26:20    Heather 

That's a really kind thing to say. I receive that. I'll also add that I really think she taught me to cultivate it. 

 

00:26:28    Alyssa

Sure. 

 

00:26:29    Heather 

Right. Like, it's kind of cyclical in that way. 

 

00:26:32    Alyssa

Yeah. I am wondering, as we're chatting about this, and I'm thinking about inclusion and belonging in comparison and how at odds those can be the inclusion and belonging and the comparison part. And I'm wondering, especially as your kids are now getting older, older in terms of Seed life or like birth to eight life as they're older and in school and navigating this. What are markers for inclusive education when they're outside of your home, when they're in community or they're in schools, what does that look like and how do we advocate for it? 

 

00:27:14    Heather 

Yeah, it's hard to know what it looks like because I'm not seeing it where we live. I know what it doesn't look like. And we've been in very few spaces. My husband and I talk about shoulder up and shoulder down spaces. And when you're raising a disabled kid or a child who doesn't quite fit the mold in life, in society, when we step outside our front door, most of the time we're stepping into shoulder up spaces where we're like tense, highly aware of what's happening, aware of who's there, who's not, what's being said, what's not, how our child's behaving or not. And there's very few places I can count on one hand with other people involved that we're just everyone's fine. Yeah. Shoulders down, and I think your shoulders down space is a space of belonging. I will pull out from the book that you've referenced, Everyone Belongs, because I think it so far is the best way I've been able to communicate what a space of belonging looks like. And there's three things. I have it behind me, so I might have to pull it up. But there's three lines that the two sisters in the book, who are the main characters who put on this play, say to the people who show up. And one is they say, exactly who you are is exactly who we pick. This idea that when Mason shows up in a space, she just gets to show up as she is, without any expectations for her to be more like the other people in the space. When you go to school, that's not the case. When we go to theater class, that's not the case. Her peers as a teenager, her peers don't know how to be around her with her being her, because it is so different than who they are socially. And if she can't become what they are socially, then she's out. So there's no belonging there. She doesn't get to be who she is in a space. So I think that's important. It's just looking at people as they are, assuming that good about them, assuming good, assuming they can, and allowing them to be who they are in a space. And then the sisters say, we're so happy you're here. You're in the right place. So there's, like, a moment with all the kids coming up where they're feeling truly the sister can sense some anxiety in the group. People wondering, like, can I do this? And interrupts everyone's thoughts and says, we're so happy you're here. You're in the right place. And the amount of times that Mason walks into a space, and no one says that, no one says that. Nobody says that to her. And even if she were to walk, I use I'll use an example, like, into an algebra two class, which she still wrote, counting numbers, even that idea of like, oh, my gosh, Mason, you're here. I'm so happy you're here. This is going to be a really hard class for you. But you know what? I know who to call. Let me call this person, and let's find the support that you need in this math instead of like, oh, you don't belong here, because you can't do this. That idea, like, we are so happy you're here. Let's figure this out together. You help me, I'll help you. 

 

00:30:06    Heather

We can do this together. And then the line at the very end, which gets me teary every time too. Is there's a kid, a wheelchair user, who comes up and they realize that this stage doesn't have a ramp and so they have to problem solve it, I'm giving the end away, but it's 1000 words, so it's a picture book. And then Truly says the space is the problem, not how he gets around and how often, I choke up every time, how often disabled kids or kids who don't fit the mold are seen as the problem. And this is Mason and Auggie's whole life is you are the problem. Your disability is the problem. The more that you can be like your non-disabled peers, the more you get to be here. And so the not belonging is happening in every space we're in, most spaces we're in. But how do you foster belonging and inclusion? Well, I don't believe that inclusion can happen without a foundation of belonging. And foundationally, I think. Right? As I think foundationally it is those three things. Who you are is who we want in this space. We're going to figure this out together. Right? I'm so happy you're here. And the space is the problem, not you. So if we can start that, if that's our foundation, then it's going to be hard and it's going to be uncomfortable. It's going be to all those feelings that we have as human beings. Right. And our kids are going to experience but foundationally, we start there. That's the starting point. And then inclusion can happen. Then inclusive practices can be implemented in a space. 

 

00:31:36    Alyssa

Yes. Like, sign me up. Yes. 

 

00:31:39    Heather

Now how do we do it? 

 

00:31:40    Alyssa

Makes me cry all the time. Just this morning, I had a teacher who reached out. I'm doing a workshop here soon for a group of early childhood educators on challenging behaviors. And I had a teacher who will be present at the workshop who was like, yeah, I just have so many kids with really challenging behaviors this year in my classroom. And the immediate feeling I had was frustration because I was like, if you have so many kids in your classroom that are having challenging behaviors, it's not the kids, it's the system. Like, what are we expecting them to do? Is it developmentally appropriate? Are we meeting their, in our case, often, sensory needs? And how are we setting these kids up for success? To be themselves? Right? And, like, my child sitting at a meal is really hard for him. And the experience of eating he's a tactically sensitive human, and the experience of eating is not always easy. And was just chatting with his childcare provider, who is incredible the other day about like, listen, I don't care if he sits in the chair. Like, if you don't care if he sits in the chair, I don't care if he sits in the chair. He can stand at the table at our house. There's a tower. He can climb up and stand, and he'll swing his feet and whatever while he's up there and eat a food and great. And then we were having this discussion about like, will that always be the case? Right? Like, and how bullshit it is that it won't. Yeah, that like, he's he will at some point be in a classroom or in a school setting where there's conformity expected and rather than what helps your body thrive and learn and grow. And how do we create a space that makes that happen? I think the space is a huge thing in the school community. 

 

00:33:49    Heather

Yeah. The space, even in regards to support, like that teacher you're talking about, she's got all these behaviors in her classroom. It's like, okay, somebody's here is under supported. Is it you a teacher, right? Like, how many more what other kind of support needs to be in here? This space is the problem. Quit looking at disabled kids is the problem or whatever it is. And it's not to say that my kids with down syndrome, we don't have expectations for them. We do. I don't know where the perimeters are, but we have perimeters around things, and we have expectations and certain behaviors are expected, and we're not going to be like, too bad, this is what they feel like doing. I think that's just an all parenting. I think that we all want this checklist. Well, what do you mean that your son can be on the tower? What about this? Well, what about it? Let's figure that out for our kid as we need to figure it out. But can we start with, oh, my gosh, I'm so happy you're here. Right? Can we start with exactly who you are. That's who we want here. Can we start there? Because I think once our kids you know more about this because this is your profession, but I'll speak for me and my kids, once we feel a sense of belonging, it really changes everything. Posture changes, and, you know, this behavior is unspoken communication, nonverbal communication. And so I think with Mason in the world and with school and everything is so hard right now, what her behavior is communicating is I just want to know that I belong here. And when nobody talks to me and no one invites me to sit with them at lunch, and when I act out, I am out of control of my body, and I'm getting weird looks, and people are avoiding me in a space. Why would I want to be in this place? Why would I do anything but behave the way that I'm behaving? I just want to belong. I want when I belong. And unfortunately, the foundation for schools in America, essentially, but especially California, the foundation is not one of belonging. It's one of exclusion. That's how schools are built. And that's never been ripped up. It's just been bandaid correct. And so we've got to rip it up, and that's radical. And people don't want to do radical things. I do. 

 

00:36:12    Alyssa

And the thing is, and I was thinking about this with the teacher who reached out today, I was like, oh, in so many ways, her life, the teacher's life, is harder in the day to day because of the space, the supports, that by not ripping it up, it's actually harder for the adults. Like, if we ripped it up and looked and we're like, what would it look like to create a system where everyone feels that belonging and an inclusion? And we would see fewer challenging behaviors. They would drastically decrease because kids would feel safe and connected, and it doesn't mean they wouldn't have hard feelings. They're going to get disappointed when they can't figure that thing out, et cetera, but they're going to have a safe space to turn with those feelings and an outlet and supports in place for navigating them. And we right now, as a culture, are making it so much harder than it has to be by not ripping it up. 

 

00:37:16    Heather

Yeah. 

 

00:37:17    Alyssa

Not just for the kids, for ourselves.

 

00:37:19    Heather

For everybody. This is what I always talk about with inclusion. Like, yes, this is going to be good for Mason, but you know who's going to be great for everybody else? Everybody else. And the thing, too, about belonging, I think when you have that foundation of belonging. I was talking with a friend of mine whose daughter has she's autistic and has cerebral palsy and needs a lot of support in her day and in her life. And they have her in a separate school for kids with disabilities so that she has those supports. And we talk about and this friend very much believes in inclusion, and she has said, in order for my daughter to be included in the bigger picture, she has to have this classroom space. And I think it's not even about when I talk about inclusion, it's not even about the space at this point, like the separate classroom versus the not if you start with belonging and you start with that, who you are is enough. Who you are is good. We're so happy you're here. Then, naturally, on a good foundation of belonging. As we start building, there's going to be separate places, but it's not going to be that separate, other class with the kids who are less than me, which no one's saying out loud, but that is what has been communicated, continues to be communicated and perpetuated because the separate class is fine. If you need a separate class, have a separate class, totally. But everyone in the separate class needs to be seen as fully human and honored as full humans. 

 

00:38:40    Alyssa

I mean, it translates all down the road. Like, say you're a nursing mom at work and you need a space to go and pump and store your milk and whatever. This translates all down the road. You're not less than for needing that. That's what you need to thrive as a working nursing mom or parent. And I think, oh, God, I love you so much. I love this core foundation here. And those questions throughout the book I think are so important for us as the adults. I think all children's books should be written as you write them, where they're not just for kids, they're for us as the adults reading them, to be able to reflect and say, like, where do we go from here? What is important? How do we deconstruct and rebuild? And what questions do we ask ourselves? And you just do that so well. And I'm so grateful for you and your work. 

 

00:39:40    Heather

Thanks so much. I'm grateful for you, too. 

 

00:39:43    Alyssa

Where can people find more about you and your work and your books and all that jazz? 

 

00:39:51    Heather

Heatheravis.com has it all, or theluckyfew.com both will take you to all the links. We have a podcast called The Lucky Few. I have two co hosts who are also moms of kids with down syndrome, and it's a down syndrome specific podcast. Anybody can listen. And we have a handful of listeners who don't have a loved one with down syndrome that are avid listeners. But we have experts on and talk about every single topic you could imagine that's connected to down syndrome and on Instagram at theluckyfewofficial. 

 

00:40:24    Alyssa

Thank you so much. We'll link to all that jazz for folks who maybe tune into a podcast like me while you're doing the dishes and can't go to them now. They'll be on our blog at voicesofyourvillage.com. Thank you so much, Heather. You are a gift in this world and I feel grateful for you. 

 

00:40:43    Heather

Thanks, Alyssa. Thanks for having me on. I'm so grateful for this conversation and for what you're doing. I love the conversation you're having with your kids. All this hope in the world, you guys. 

 

00:40:53    Alyssa

So much hope if we can find it. 

 

00:41:00    Alyssa

Thanks for tuning in to Voices of Your Village. Check out the transcript at voicesofyourvillage.com. Did you know that we have a special community over on Instagram hanging out every day with more free content? Come join us at seed.and.sew. Take a screenshot of you tuning in, share it on the gram and tag seed.and.sew to let me know your key takeaway. If you're digging this podcast, make sure to subscribe so you don't miss an episode. We love collaborating with you to raise emotionally intelligent humans.

 

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