Podcast

Episode 78 – Heather Avis, Special Needs Advocate and Author

To celebrate Down Syndrome Awareness Month, Heather Avis is joining Jessica for an incredible conversation about inclusion and advocacy. Heather is not only an Instagram star and mom to three adopted kids—two with Down Syndrome— but she has made it her mission to introduce the world to the unique gifts of those pushed to the edges of society. This is an episode that will leave you inspired and saying to everyone, “Hi! What’s your name?”

Heather Avis Going Scared Podcast

TRANSCRIPT

Jessica: Hey everyone! Welcome back to the Going Scared podcast. This is your host Jessica Honegger, founder of the social impact fashion brand Noonday Collection. Are you ready for honest and vulnerable conversations that will inspire you towards action? Join me here every week for conversations on living lives of purpose by leaving comfort and going scared.

Today’s episode is a special episode to me. Did you know that October is Down Syndrome Awareness Month? I don’t know if you have any people in your lives that maybe have children with Down syndrome, or that have Down syndrome. I have—one of my best friends in the whole world, Mica May, of May Designs, has a child with Down syndrome. And then my business partner, who’s also one of my best friends in the entire world, his son has Down syndrome. So, walking with them, vacationing with them, doing life with them has enriched my life and has enriched my children’s lives so much.

I was scrolling Instagram this week, and I saw a post by a friend of mine who has a child with special needs—it’s not Down syndrome, but I feel like this could resonate. She wrote a blog article, and she says, “And by God, when someone else thinks they know how to parent Leo better, so he just won’t act the way he does, we notice. All the different ways others go about trying to limit their or their child’s interaction with Leo, we notice. It does not go unseen. They are not being sneaky, or clever, or discrete, or smart. They are being unkind and dumb and rude and exclusive. And they are missing out on an insanely awesome kid.” I know that she is not alone as a mom of a child with a special need and wanting maybe those of us who don’t have that to wake up and to make more room at our tables, in our families, and in our children’s lives. That’s why I’m so excited about today’s guest, Heather Avis.

Heather Avis’s newest book, Scoot Over and Make Some Room, really is a gentle guide to those of us that need to know how to make room for people at our table that don’t look like us, that might be different from us Heather started her career as an education specialist. And she left that to stay at home as they adopted their first daughter, Macy, their second daughter, Truly, and their third child named August. She runs the hugely popular Instagram account, Macy Makes My Day, where she shares about the awesomeness of all things Down syndrome and adoption.

What I love about my conversation with Heather is how she can show up so courageously and share so vulnerably, sharing what can open up for you when you let go of control in seasons when control feels like it’s all you have to hold onto. Her call to action, to scoot over and make some room, is bold and beautiful and just what we need to be reminded of today and every day. It’s a challenge to see the beauty and learning that can come from some of the most uncomfortable places.

She also talks about how to be an advocate. And I love what she has to share because advocacy can come from a place of shaming other people, or it can truly come from this place of inviting other people to open their eyes and make room in their hearts. And that’s definitely the space Heather comes from.

 

The Scariest and the Best Yes

Jessica: So, I wanted to let everyone in a little bit more on your story, for those of us that might not know you. You’re a mom of three. You have adopted all three of your children. Two of them are children with Down syndrome. And I wanted to hear a little bit about the backstory of how you landed on adoption.

Heather: Yeah. So, it is a very long story, and I wrote a whole book about it. But to keep it brief, so we tried to get pregnant for years and couldn’t. That’s kind of where we ended up, and it was on a crossroads of adoption or IVF. And at that moment in life, it just … IVF didn’t feel like an option, and so we chose adoption. And went down the path of adoption wanting a healthy infant and paid a lot of money for a private agency and checked all the boxes that would lead us to a healthy baby. And God had other plans, and we ended up adopting a little girl with Down syndrome. She was about four months old. She had Down syndrome, a congenital heart defect. She was on oxygen 24/7 for a pretty serious lung condition that we were told was incurable in medicine and all this crazy stuff we’d been trying to avoid. And there we were. And she changed everything forever, for the better, opened our eyes to this whole world of Down syndrome, and having children with medical issues and adoption, I mean, so many spaces.

Jessica: And how old is she now?

Heather: She will be … she’s 11. She’s 11.

Jessica: Eleven. OK.

Heather: Yeah. Yeah. And so, all these scary things about her health, everything’s … she’s fine. She’s totally healthy. She had open-heart surgery a month after coming home. And two years after coming home, or two and a half years after coming home, her lung condition resolved itself. She was totally healed, my little miracle. So, she’s off oxygen, off all her medications. By the time she was four, she was off of everything and totally healthy. And so, we go to cardiology every two years, and they check her heart and say it looks great and we see pulmonology every two years, and they say she looks great, and we just keep on trucking along. So, she was my, I’d say she was my scariest and my best yes. Yeah. There’s a lot of details, and it’s a long story.

Jessica: Usually, those scary things, though, are the best. But there is something that led you … Because I know your whole platform is like, "We’re just a normal family," and you just wanna make this normal. My business partner has a child with Down syndrome. One of my best friends, Mica May, I know she’s one of your good friends too, she has a child with Down syndrome. I’m surrounded, I feel like, really, with very close people in my life, and I know part of your platform is just saying, "We’re just normal families just doing it a little differently with kids that have maybe different abilities than your kids." But at that one point, that was scary to you. What do you think…? And this is just, wherever our listener might be right now, dealing maybe with a choice where they think, "This seems scary, too scary, like, I-can’t-even-look-at-it-closely scary. How do we draw a little bit more or near to make the unscary the best?

Heather: Right. So, for us with Macy, specifically. It was definitely like, we couldn’t look too far ahead, and we just kept taking one step. And that, for me, has led me through all my scary decisions, is I just have to take the next step, and sometimes it’s not even like a full step. It’s like, "I’m so scared out of my mind right now, I’m just lifting my foot up, and I don’t know what’s gonna happen next, but I have to do the one next thing." And if I think a week ahead, or doctors are saying she might not live to be five or even eight years old. If I’m thinking about far ahead, then I’m frozen. I’m not doing the next thing. So, it really was … the way we got through all the things that felt terrifying was just that next step, the next step, the next step. And then the next step would always lead to the next step. And if we had a chance to say yes or no, depending on what the situation was, that was our next step. And it got us to where we are. Really, it was a one step at a time.

 

Adopting with Arms Wide Open

Jessica: So, you bring home Macy, she’s your miracle baby, and then how did you decide to go about growing your family after that?

Heather: We knew … I always knew I wanted more than one kid, so … and I always wanted three kids. We have three kids now. So that was just … We were pretty all-consumed with Macy. She was really sick, and those first couple of years were pretty intense, but it was also all we knew, so it was our normal. So, it didn’t feel as intense because it was just … it’s what we did. And then, when it was time to grow our family, we felt … the first time we pursued adoption, we really had tried to control the whole thing and ended up with a child that was totally opposite of what we were trying to get in a child, on paper, at least, and it was the best thing ever. So, our next adoption, we were arms wide open. We will take any child in the whole wide world with anything.

And we went through our local county. County adoptions are free, and so we went looking for kids who were in the foster care system and ended up with a little girl. And when we saw the paperwork, we just filled it out like that. We were open to almost everything, which was very opposite from our first one. And we get a phone call for a little baby girl who is five months old. She is … we were told she’s Hispanic and ready to be adopted. And no drug exposure in utero, no special needs, no major health issues. There was some stuff happening with birth family that is heavy and that we had to consider and talk through, but that was it. And so like, all right, this is the baby that we’re being offered, and it was the first thing, and we said yes.

So, we brought home Truly. Her name is Truly Star, and come to find out she’s Guatemalan and African American. And she was five months old when she came home, or five and a half months, and just could not be more opposite than her sister. Yeah. I know a lot of women who have one and then when that second one comes were like, "Wait a second. I thought I already knew how to parent, and now I’m starting all over again. I don’t know what I’m doing here because this child is so different." And she’s amazing. She’s amazing. Yeah.

Jessica: Wow. And then…

Heather: And then…

Jessica: …you’re not done yet.

Heather: We’re not done. There’s more to the story. And then, we were just in a season where everything … I was at max capacity. I like to talk about when you have multiple kids under the age of five or even a kid, I call that season “In It.” You are just in it. And I felt in it. I felt like my plate was full to the max. If one more thing was put on my plate, I would fall over, and I’d be done for. There’s no possible way I could continue life if I had one more thing to do just because of our kids’ unique needs, for the two of them. And then we got a phone call from a really dear friend of mine, and she said, "Oh, my gosh, I just … a birth mom just reached out to me, and she got an in-utero diagnosis for Down syndrome, and the baby has a congenital heart defect, and it’s a boy." Dangling that carrot in front of me because we had two girls. "And you should adopt him." And it was a moment of like, "Ah, why God?" Of course, Of course, we’re gonna pursue this. We’re not gonna be like, "Nope. Sorry."

Jessica: Wow.

Heather: And so, before I knew it, within the hour, I’m online talking to this birth mom, and she’s due in two months. And two months later, our son was born. So, he was born with Down syndrome, congenital heart defects, and then he had open-heart surgery four months later. And he is like a dream. He’s a dreamboat.

Jessica: Wow.

Heather: So that’s how we have our kids.

Jessica: And then you put a bow on it.

Heather: And then we put a bow on it, I hope. Obviously not…

Jessica: You know what? Joe…

Heather: …made of steel.

Jessica: Right. I know, right? Or you put, like, a bolt lock on it.

Heather: Exactly.

Jessica: Joe and I were talking the other day about how when our kids were one through five, it went by so slowly. Oh my God, those years and that … But the last five years, our kids now are 10, 10, and 13, and it feels like it’s going so fast. We just sat down, and we were like, "We only have four summers left with Amelie." Like, you know?

Heather: Yes. That is heartbreaking.

Jessica: It’s crazy.

Heather: It’s crazy.

Jessica: And when they’re so young, you’re just exhausted all the time and now…

Heather: Oh my gosh, yeah.

Jessica: We’re just … we’re having fun. It’s crazy those seasons and how they change. And yet when my kids were that age, that’s when I started Noonday, which seems crazy that during that time when you’re most exhausted, you’re often starting your career and doing all these things.

Heather: Isn’t that wild? I know, I started … I was a fulltime stay-at-home mom, and then we started this little Instagram thing that got bigger than we anticipated, and then publishers were reaching out like, "Do you wanna write a book?" And, yeah, my kids were … I mean, when my first book came out … when I wrote my first book, my kids were under one, three, and five.

Jessica: Yeah. It’s crazy. You’re like “How did I even do that?”

Heather: It’s crazy. Who does that? Exactly.

Jessica: Really? Really? Yeah. Exactly. I don’t know.

Heather: I really don’t know. And we didn’t have a lot of money, so we didn’t have a nanny. I’m like, "Who took care of the kids?"

Jessica: Totally.

Heather: What happened?

 

Special Needs Parenting and Advocacy

Jessica: Yeah. Yeah. No. I mean, It is crazy. I was doing kid swaps, trades. I mean … Oh my God, it’s nuts. It’s nuts. Let’s talk a little bit about that because I know every mom who becomes a parent to a child with special needs is an advocate. That is just part of your new job description. Like “Hello, guess what? You get to now be an advocate.” But you’ve really taken it the next step, and you have built influence and platform, and you’ve created community, which, by the way, is so amazing. Anybody I know who does have a child with Down syndrome has just benefited so much from the community that you have created, so thank you for that.

Heather: Yeah. Oh, my gosh, thanks.

Jessica: So, tell me about that journey of, you’re advocating every day because that’s just what you do, and then you start an Instagram account. How did you then start to become this more public advocate?

Heather: Yeah. I learned … So, my middle daughter, like I said, is African American and Guatemalan, my husband and I and our other two kids are Caucasian. And so, we also, in terms of advocacy, we’ve stepped into the race conversation in a way that we didn’t have to because of our whiteness and our privilege. And so, in doing that and then in having kids with Down syndrome, just being in these communities, realizing that advocacy … to not choose advocacy is, in fact, a privilege that not everybody has. And that people of color and people who are raising kids with different abilities or in different kinds of people groups, it’s not really an option to not advocate. And that people … I like to encourage people who feel like they’re not an advocate, it’s like, “Oh, you can do that and the fact that you get to choose not to, that’s a privilege.” Let’s really look at that for what it is, and then step into advocacy in a way that we all should, in my opinion, that we can all be advocating for someone else.

So, I’m just raising my kids and realizing that when they step outside my front door, they’re stepping into a world that continues to fail to see their full worth and value, and to segregate them and to marginalize them, and so that’s unacceptable, right? I’m their mom, and so then we’re just like, “OK, well, let’s go to school. Oh, you’re not gonna let my kid learn with other kids? Wait a second, why and how?” Figuring out the law. So, it just started as being a mom. And then, with social media growing, I realized that a lot of people are in the same category and feeling the same way and that people are listening to me. And I wasn’t necessarily looking for that, but that feels really sacred and really humbling. And so, we’re trying to do good for that, do well with that, steward that well. And that helped me to really find my voice.

And I think that I’m also learning with advocacy is it’s … I think a great advocate is always learning. And if you’re showing up like, "I know everything," then that’s just gonna create barriers. It’s gonna create walls. It’s gonna create resistance, or it’s gonna get harder to get through the resistance. And if you show up like, "Hey, this is my story. This is what I know, and I’m still learning," that helps people listen more—to show up as a learner as well as someone with a voice. For me, it’s been a fine balance to find how to intermingle those two things—to stand on a platform and say, "Hey, this is what I know to be true, and I’m still learning.” I think it’s a hard balance, one that I’m constantly…

Jessica: How do you think you learned that? And I know, in your latest book Scoot Over and Make Some Room, you talk about this idea that we’re prone to ignore people instead of engage. And as an advocate, it’s the opposite of ignoring, right? It’s actually … I mean, how would you describe advocacy, and then where have you seen advocacy gone wrong? And then we’ll talk about your journey, which is really how it’s gone right.

Heather: Yeah. No one has ever asked me how I would describe advocacy before, and I’m like, "Oh, I don’t know." That feels like a hard question. I’m gonna have to sit down and write that down somewhere. But off the top of my head, advocacy is doing the right thing for people. It’s doing the right thing. And when you see an injustice or something that’s going wrong, it’s saying, "This is not OK" and then doing the right thing within your sphere of influence. And everyone’s influence is different.

Jessica: And either way, that … This is so random, but this morning I was running through Whole Foods really quick kind of unexpected, I’m just gonna grab something kind of late, and I walked down an aisle, and some chips had fallen off the aisle, and I walked past them. And I was, like, "No. You’ve gotta go pick those chips up." Because that means that you’re telling someone else, you’re telling the person who works at Whole Foods, "You need to pick ’em up but I, as a customer, can’t." It’s almost like … I know that that is such a stretch, but it’s taking these ordinary, everyday moments of choosing to do what’s right for someone else.

It just happens to be in your situation, you’re doing it for people that have been massively underrepresented and massively really been oppressed in many ways. But I love how you just simplified it because I think it’s easy to look at someone like you and say, "Well, that’s an advocate," you know? And, "Oh, my gosh, to be a real advocate, I need to go adopt children with special needs or adopt a child with a different race" but what you’re saying is it’s just doing what’s right for other people, and we can make choices for that every single day.

Heather: Totally.

Jessica: I love your on-the-spot, quick definition, Heather. That just came from your heart.

Heather: Thanks, girl.

Jessica: That was good. That was good.

 

How to Be and Advocate

Heather: It just came from my heart. And going along with the chip thing, I think it is looking outside of yourself. That’s the key to advocacy, to look outside of your own self with the eyes of a learner. I think that a lot of people approach things … We’ve got all of our layers, right? The way we were raised, our socio-economic status, our ethnicity. There’s all these layers that we carry around in life and to say, OK, to recognize that self-awareness and then to look outside of it. And oftentimes, if we see an injustice that we’re not experiencing, the knee-jerk reaction is being defensive. So, any time I find my knee-jerk reaction to be defensive, that to me is a signal to shut up and listen and, OK, why do I feel defensive and what is this group of people feeling, saying, doing? I don’t understand this, so I’m gonna learn about it instead of defending myself in it. That’s been a big piece for me in learning how to be an advocate that is in my own advocacy journey.

Jessica: Right. Well, an advocate who is gaining influence and traction. Yeah. So much of it is just stopping and becoming aware of yourself first, that self-awareness piece. Why do you think that people, good meaning people, are more prone to ignore instead of engage? What are those obstacles that keep us from engaging, that keep us from, whether it’s, gosh, seeing a person … I’m thinking about someone struggling to get into the women’s room at a restroom who’s in a wheelchair. In that moment, that person could probably use a like, "Hey, can I help you out?" You know? Or … I mean, I just think there’s all these little moments of advocacy that we could choose, but we often freeze in those moments. What are those obstacles?

Heather: I think one of the biggest ones is our own comfort. And I don’t know how it is in all cultures, I don’t know if this is just a human thing, but especially in the United States that we are … we deserve comfort and that we are at all costs to be happy and comfortable. I think that that is harmful, and that’s a lie that we’ve been fed, and we strive for. So, I think our own personal comfort is a huge barrier. I think that people don’t know how to … I think there’s a humility aspect piece to it to be humble enough to ask the questions and to get it wrong. So, with that example of seeing someone who might need help, there’s a chance that when you help that person, they’re offended by that, you know? They might be, like "What are you talking about? I got this." And our own pride gets in the way. "Well, oh, no, what if I do the wrong thing?" Well, we gotta be OK with doing the wrong thing sometimes as we’re learning. And so, that can get in the way.

And then, I think people feel … I’ve experienced this a lot in the Down syndrome community, people will look at me and be like, "Well, you have all of this influence, and you have this different skill set, and you are a good advocate. I’m just a stay-at-home mom. I’m barely getting through the day changing diapers, who am I to be an advocate?" And so, our own circumstances and our comparison, comparing our lives with the lives of others, gets in the way, too. Where it’s, like, no, in your own circle, you have so much influence even if it’s one person. I want people to know exactly where they are, they can be an advocate for, fill in the blank, for anybody. You don’t have to be on a big stage in front of thousands of people. You just have to recognize that you actually have a voice and that you can use it, and then you have to do it. You have to step into it and use your voice.

Jessica: So how can we go about making room for others?

Heather: You have to see it first, so you have to take off some blinders and be willing to see what’s happening. You have to ask yourself, who is not at my table? Who is not at my playgroups? Who is not here? And, to be real honest, people from all over are listening. And there are certain places in cities and towns that are very homogeneous, and there’s not really anything you can do about that, right? You live in middle American in a certain city of a hundred people, you’re limited to … there’s some limits there. Whereas, I’m in Southern California, so we’ve got all kinds of diversity in Southern California. So, I have to lay that out there. I get that, that this is different for everybody.

However, everybody can pick up a book written by somebody who has a different ability or who’s a different race than you and learn from their experience and read a book. Everybody can go on social media even. Social media, we all know, the stats are out there. It’s been an incredibly harmful tool for a lot of people. However, there is some real good stuff that we can get out of it. So what are the social media accounts that you can you follow that are people who have different abilities who are self-advocates, that are people of a different ethnicity than you, who are talking about race and their space in the world and the injustices being done against them? There’s ways that we can learn from each other.

 

Inclusivity Is Showing Up and Making Room

And then if you do have access to a wide variety of people, I like to talk to parents about schools. If you notice that at your school there are no people of different abilities in your child’s classroom, they are in your city. So, this should be a huge red flag. And something super simple, asking your teacher, like "Hey, I noticed that there’s no one in this classroom who has a different ability or who has Down syndrome or who has a mobile disability or something, right? And I know that my kid will be better off learning alongside people who are different than them. Is there a classroom here on campus, a special ed classroom? Are they at a different campus? What can we do to make our school more inclusive?" And then asking the administrator, "Hey, what can we do to make our school more inclusive?"

Because I guarantee you the parents who have a child with a different ability in a public-school setting are asking those questions constantly. That is … I’m walking into a school, and I’m that mom. I’m the mom that everyone’s now a little bit annoyed with and terrified of because I’m like, "Hey, guys, my kids are gonna be treated with respect, and they’re gonna have the same opportunities as everybody else." But I’m the only one saying it. And if all of the other parents in the classroom are saying it or all the other active parents at school are saying it, then we would see huge changes happen for people with different abilities. And the truth is, sticking with the school setting, your kid without a different ability, is going to have a better education if they’re learning alongside someone who is different. All the inclusion statistics and reports show that. That it’s best for everybody in the classroom, not just for the kid with a different ability.

So, it’s noticing who’s not there and then saying something to the people in charge. And it depends on your skillset. If you’re all about politics and laws and things that I am not great at, that’s not my strong suit, then figure out what the laws are and write your senators and write people who have power and say, "Hey, this is what I noticed isn’t happening. How do we change this? What can we do to make this better?" It’s just showing up.

Jessica: It’s showing up. It’s showing up, but you have to see first. Right. You have to actually put the new glasses on.

Heather: Yeah. It’s so hard, so hard.

Jessica: It is hard. It is hard. But, again, we often don’t put the … I mean, I’m saying, “Gosh, I put my glasses on huge when I come to work every day but are they on when I’m at my house, and I’ve got my neighbors around, and a guy who could use probably some friendship right now, you know?” So, there are all these places where we can go ahead and put the glasses on.

So, if we were to run into your family out and about at a park, what…? Instruct us. We’ve got our kids with us. How would you want us to be around your family? Would you want us to be like, "Oh, hey, does one of your kids have Down syndrome? One of my friends does, too. Do your kid wanna come play with mine?" Help us, guide us through how we can make room when we’re just out in public like that.

Heather: Yeah. I think … I mean, there’s so many answers to this question, surprisingly, and I can think of a dozen scenarios that have happened to us in real life. And also, I have to say that personality plays in here. I am like an open book. I’m social. I wanna know everyone and be friends with everybody. I’m not easily offended, so I have to say all that upfront, too. And I want people to ask the questions because any time a parent … the side-eye or the curious stares or the … we’ve had people hush their children who ask questions. We’ve had people pull children away from our children. Those things all are noticed by me, and at this point in my life with my oldest daughter being 11 years old, she notices it too, for sure, and maybe my five-year-old. My eight year old is … I mean, all of my kids notice. They see what’s happening. Kids are so freaking smart.

So, the simplest, easiest thing is, "Hey, what’s your name?" "Hey, how’s it going? What’s your name?" And my daughter, my oldest daughter, is so good at this. She asks everyone their name everywhere we go in the whole wide world, whether it feels appropriate or not. This is her thing. "What’s your name? What’s your name? What’s your name?" And for someone to walk up to her and say, "Hey, what’s your name?" Would make her day. And then, "Wanna swing? Wanna play chase? Wanna go do whatever?" And she might say no, and she might say yes. But seriously, it’s that simple. What would you do to invite any other kid to come play with you? "Hey, what’s your name?"

If your kid has questions, let them ask questions. I love when kids ask questions. "Hey, why is she not talking?" Parents might be like, "Oh, my gosh, how could you say that?" No way. "Great question, kid. Let’s talk about that." "She’s got Down syndrome. She has a speech impediment. " We can talk about how she’s got low tones or her … all your muscles … all your mouth is made of muscles, and everything that it takes to talk is muscle, and her muscles are weaker, so she talks different. And almost every time kids are like, "OK. Cool. Wanna go on the slide?" You know? So, I say, yes, approach. If you have a loved one with Down syndrome, that’s for sure a plus. "Hey, my best friend’s kid has Down syndrome. Does your kid have Down syndrome?" And I really would only do that if you’re almost 100% sure the kid has Down syndrome.

Jessica: Yeah. Yeah. That is the thing. That is the thing.

Heather: That is a tricky one because I’ve been off … I’ll see people out in public, and I’m like, "I’m not sure. I’m not sure." And I won’t say anything unless I’m 100% sure.

 

Building a Community of Support for Special Needs

Jessica: Right. Right. So, I also wanted to ask, so you talked about how we all need to be a community together. We don’t need to silo ourselves, and this is the special needs community, and we’re gonna be advocates. But, no, if we just all … like the village mentality … Which honestly, I see that when I travel overseas, whenever there are kids that do have special abilities in the community, I mean, it’s such a communal effort to just say like, "This is our kid. This isn’t my kid. This is the village child, and we’re gonna take the village approach."

It’s also important, though, to have that safe tribe of people that you’re like, “OK, this is where I can let go and just complain about those horrible interactions at the park when they do happen.” And you’ve really built that. Let’s talk a little bit about how you went about building community among women that have kids, specifically, with Down syndrome, and there’s even been a tattoo. So, talk to us about that.

Heather: Oh, my gosh, isn’t that wild.

Jessica: Crazy. Crazy. Yes.

Heather: It’s so crazy. I’m sure you’ve found this in the work you do, but when you’re in a marginalized group and people raising kids with different abilities because our kids are, we are, they’re also, it’s a constant … I always talk about … my shoulders are up. We walk into public spaces and my shoulders are up, and I’m constantly aware of what my kids are doing and what they’re not doing and how people are responding and how I’m responding. And I don’t even necessarily realize that about myself except that I’m exhausted. And I think people of color feel that way when they step into the world. I think a lot of different marginalized people groups feel that way. And so, it is so important to find your people, where you can let your shoulders down and that "Me, too" is the most powerful thing even amongst mothers, right? Even just within motherhood to be like, "Oh, I get it. I get you. Yeah. Me, too."

And so, I found that when I’m with people who have kids with Down syndrome, when we’re all together, my kids can just fully be who they are. I’m not totally worried about inappropriate things. We can laugh about speech things. We can laugh about potty training. We can get frustrated about teachers. Even though all of our kids are so, so different, there is that common thread, and it is my people. And I have gone from people being total strangers in line at a Panera or at a restaurant to sharing a table and then we have each other’s phone numbers and then now we’re lifelong friends because of that connection, that extra chromosome. And I think specifically in the Down syndrome community, which is the community I’m in, so I can speak for that more so than other communities, it’s super fierce. And so, that connection with moms who have kids with Down syndrome, it’s this magical connection.

And a friend of mine, her name is Liz Plachta, she started a non-profit called Ruby’s Rainbow. And she loves the mama connection. And we were  total strangers connected over social media because of our kids. We meet each other, it’s that instant, we are each other’s people. And she started … She said, "Hey, would you ever wanna come to a women’s retreat or a women’s kind of a weekend away for moms who have kids with Down syndrome? And I’m like, "Oh, I’ve been wanting to do something like this. Do you have a partner?" So, we decided to partner up and invited 26 women. We didn’t know if they would come or not. "Is anyone gonna come?" And they all came and then within the end of that weekend we’ve got a waitlist of 100 people. And women are desperate for this.

And so, you get 26 people from all over the nation coming together, a lot of people don’t know anybody there and by the end of first day we’re just connected to each other, because we have that similarity. We’re struggling in the same ways, and we see the struggle, and we don’t have to explain it. To not have to explain yourself is such a relief. It’s just such a great thing to be like, "Yeah, I see you. I know you. I get it." And then by, four days later, I think this is partly being women, partly being moms, then you add that extra …. having a child with Down syndrome, we’re like family four days later and totally connected.

 

Twenty-Six Moms, Three Arrows, One Worldwide Movement

And so, I can talk about the tattoo. So, the first retreat we did, our mutual friend, Mica May, was there. And I love … I’ve always wanted to get a matching tattoo with someone. I have two sisters who refuse to do it, I’m like, "Ah, whatever." But no one will get a matching tattoo, so day one I’m like, "Hey, guys, we’re all strangers, we should get matching tattoos." And then people laughed it off and I said, "No. I’m very serious, friends." And so, by day four, we’re like, "OK, we’re serious."

Jessica: And weren’t y’all in Austin?

Heather: Yeah. We were in Austin.

Jessica: We’ve got plenty of brilliant tattoo artists here.

Heather: I know. So, by the last day, we were on the phone, "Can we get a tattoo artist to come to us?" Because there’s 26 of us. How do you get 26 people in a tattoo parlor last-minute, you know? And what’s that major music festival in October in Austin?

Jessica: ACL.

Heather: Yeah. ACL was happening the same weekend, so it wasn’t as easy as we thought it could be. There were some practical things that weren’t gonna make it happen. So anyway, Mica … we’re like, "What should be…? What should be…" Everyone’s throwing out ideas, and then Mica tells this story about having a dream about having these three arrows on her … a tattoo of three arrows, and all of us were like, "Magic." That’s it. She draws up these three arrows because Down syndrome is trisomy 21, so there’s three copies of the 21st chromosome, so that’s the three arrows. And then arrows in tattoos, especially, represent that there has to be a tension and a pulling back before you can actually move forward, which is a lot of our stories, pretty much all of our stories, having kids with Down Syndrome.

So anyways, what ended up happening, we really couldn’t make it logistically happen for all of us, but there were eight of us who either had a later flight or lived locally. And we ended up in a tattoo parlor, and all eight of us got this tattoo in our own unique ways. And then we all took a picture. And as it goes on social media, you post it, tell the story, and the next thing you know, there are thousands of people all over the world getting this tattoo on their body. And it’s such a testament to the power of Down syndrome. That there’s this people group who can unite in such a magical way and in such a powerful way. And I’ve never seen anything like it.

And that’s the whole point of this shifting the narrative. We’re saying, this is an entire people group that those who aren’t a part of it are terrified of are avoiding it at all costs. And wait a second, look at the power that they have to connect and the power that they have to make the world better, I mean, to truly make the world better. But we’ve got to let them in to all of the spaces in the world if we want to experience that for ourselves. If people outside of our community want to experience it, then you’ve got to let them in.

Jessica: I love that. I love that. I mean, I don’t think I’ve ever heard of a tattoo going viral.

Heather: Right?

Jessica: Yeah.

Heather: It’s so random.

Jessica: For such a good cause. I mean, I love just your bias towards action. You’re like, “OK, I’m gonna be an advocate for my kids and now I’m just gonna be an advocate for all of the kids, and now I’m gonna be an advocate for my own community of moms, and now we’re all gonna go get tattoos together,” so…

Heather: That’s right. That’s right.

Jessica: We would get into a lot of trouble if we lived by each other, Heather.

Heather: Oh, I think we would. I think we need to…

Jessica: Well, we will get into trouble someday when we … We’re gonna go to Guatemala. We’re gonna make it happen.

Heather: It’s gonna happen.

Jessica: It’s gonna happen. I cannot wait. It’s just gonna happen in 2020. That’s when it’s gonna happen.

Heather: Yes. And there will be matching tattoos, piercings. I mean, so many things are gonna happen. I can’t wait.

Jessica: Wow. OK. OK. Maybe I’ll even bump it up just a little bit. Just a little bit. It will be awesome. So, we like to wrap up by asking how you are going scared right now.

 

Heather Avis: Grounded and Going Scared

Heather: So, I think it’s just a continuum. I think that I’ve chosen this line of work that is just constantly going scared. We’re just in a business that we don’t totally know what we’re doing still, and we are promoting something that is so counter-cultural that it doesn’t catch on that quickly, and that can feel terrifying. We’re not a part of the story of, this is the 20 ways to make yourself better, to get … so that you can be number one at this. So that you can … We’re not into the you, you, you, the self-help stuff. Not…

Jessica: Even though, ultimately, what you’re offering, your message, is actually what’s gonna serve us. Because we’re made for diversity and inclusion and to value people, not for what they can produce but for actually just who they are in the world, and just being image-bearers. And all of my friends that are different than me, I mean, it’s just … it’s only enriched my life. But you’re right, it’s an uncomfortable message. It causes us to evaluate ourselves, and so it’s never gonna be the fast, number-one hit.

Heather: Right. Right. And then as … I’m just a human so how that plays into my own psyche and having to always battle that, really the … making sure I have people in my life who keep me grounded and who speak truth and keep my eye focused on the main thing and not getting sidetracked by what everyone else around me is doing. It’s every day. It’s every day. And so, that’s what we’re gonna continue to do, and it scares me every day.

Jessica: I love what Heather had to share about what does it mean to be an advocate, and I’m curious. Where do you consider yourself as being an advocate in your life or in someone else’s life? I’d love to hear more about your thoughts on advocacy. Pop on over to my Instagram account. It’s @jessicahonegger—that is two Gs and one N. Let me know what you thought about today’s episode. And I also would so appreciate it if you hopped on over to iTunes and gave a review.

To keep up with Heather, head on over to her website, heatheravis.com, and I would highly recommend, too, that you just pop on over to Amazon and put her latest book into your cart, Scoot Over and Make Some Room.

Our wonderful music for today’s show is by my good friend Ellie Holcomb. Going Scared is produced by Eddie Kaufholz, and I’m Jessica Honegger. Until next time, let’s take each other by the hand and keep going scared.