Scoot Over and Make Some Room

Stepping into new spaces can make anyone uncomfortable. For many of us, developing a relationship with an individual with special needs might be new territory. In today's episode, we have Mama/Author/Advocate Heather Avis sharing her ideas about raising kids with kindness and moving towards inclusion.

"When we walk into the world with our children we know we are different. What we want is for people to embrace us, not turn away from us."

Heather Avis

Full Episode Transcription

You can listen to this episode of the Simple Families podcast in the player above or in your favorite podcast app. Or you can read the full transcript right here.

An Update from Denaye

Welcome to episode 183. This is Denaye. Today we're talking about scooting over to make some room.

Hello, hello and happy December. I hope that this holiday season is one that is bringing you joy and maybe some semblance of calm amongst all the insanity that happens around this time of the year.

If you're following me on Instagram, you'll know that I am currently doing a 25 day workout challenge starting December 1st going through the 25th. I will tell you that it is single handedly the best way to lengthen and prolong the holiday season because this month is just going on forever. Like when will it end? I'm so done. The reason I did it was because I had set a goal to reach 100 cycling rides. We have a Peloton that I like to ride and my goal was at the end of the year, I wanted to have 100 rides. Then in the middle of November I broke my toe so I was off for probably three weeks and I got way behind. So I'm like, "All right, I got to ramp it up, finish out strong for the end of 2019." The other reason that I did it is because as some of you know from my new year's resolution at the beginning of this year, I gave up alcohol. Part of that journey has been figuring out what the holiday seasons look like without wine and champagne and other things to celebrate.

So I've put in a little bit more exercise to help fill in any of those gaps, which I'm not really even feeling that heavily anymore. Next week I'm talking with Brooke Conley, who was on the podcast last year before I decided to give up alcohol. We talked a little bit about this concept and the idea of giving up alcohol when you're not an alcoholic and how it can be a strange concept for many of us, including myself. So I'm just wrapping up that year now, very soon in the next week or two. I'm going to be sharing all the details of that next week when I chat with Brooke.

I also want to be sure that you caught the short form episode yesterday. Starting in 2020 I'm going to be adding a second episode each week where I have a shorter episode and I cover a question from an audience member and I share something simple that I'm loving. Maybe a concept or a book or a product, whatever it might be.

So if you didn't catch that yesterday, go back and listen to that, Episode 182, I'm answering the question, “How do we handle Santa?” I'm also sharing my “something simple” for the week. So starting off in January, that will be a weekly occurrence and I hope you enjoy that.

Meet Heather Avis, a Special Needs Mom and Advocate for Kindness and Inclusion

Circling back to today's episode, I am chatting with Heather Avis. Heather is a working mom of three and she's the author of the book, Scoot Over and Make Some Room. All three of Heather's children came to her through adoption and two of them have special needs. They have down syndrome. Heather's book and her voice has really inspired me to want to scoot over and make some room for special needs families in my own life and encourage you to do the same.

Heather and I are starting the conversation off today talking about idealization in parenthood because this isn't the family that Heather had dreamed up as a little girl. She never dreamed that she would be adopting. She never dreamed that she would be a special needs parent. So often our life takes a very, very different course than we ever thought it would and it can turn out so much better as a result. But the core of this conversation really comes with asking Heather, how can we make inclusion the norm within our society? How can we raise kids to appreciate the differences in one another? How can we help our kids see the amazing benefits in befriending people who look and act differently from us? If you're a parent, you know that sometimes it can be a little bit uncomfortable. You want to do all the things and you want to say all the right things and your intentions are in the best of places.

So whether or not you have a child with special needs in your family, your immediate family or extended family, your neighborhood family, I think you're going to appreciate and love this episode. And I can only hope that it inspires you to scoot over and make some room for children and families who look different than your own. If you want to find links to what Heather and I are talking about or links to get in touch with her, you can find those in the show notes above. Thanks so much for tuning in.

Interview with Heather Avis

Denaye:

Hi Heather. Thanks so much for taking the time to talk with me.

Heather:
Hi Denaye. Thank you for having me.

Denaye:
You're welcome. So I just recently finished your book, Scoot Over and Make Some Room, and I really enjoyed it. Now this is your second book, right?

Heather:
This is my second book and let me say thank you for reading it. I know that I wrote a book now twice, put it in the world, but every time someone tells me they read it, it's just like, "Whoa. Awesome. Thank you."

Denaye:
Yes. I feel like I know a little bit or a lot about your story now, but could you tell my audience just a little bit about who you are and who your family is?

Heather:
Definitely. So the first book I wrote is called The Lucky Few and it's a memoir. My husband Josh and I have been married for 17 years now. We have three kids. All three of them came to us through adoption. I struggled with infertility for years and adoption was not our first plan or choice. It kind of happened to us in all the best ways. Our oldest daughter, her name is Macyn and she is 11 now, she came home at four months old and she has down syndrome. When she came home she had a congenital heart defect and a very serious lung condition that we were told was incurable. We were told she wasn't going to live very long.

And again, it's a very long story but at one point before we said yes to adopting her, the cardiologist said she may live to be as old as five, maybe eight. That's how severe her health issues were, which were totally mostly unrelated to down syndrome. She just also had all these health issues. So as an 11 year old, she is totally healthy, no health issues. She's just an incredible little miracle.

Denaye:
That's amazing.

Heather:
Yeah, it is. She's amazing. And just such a testament to how babies are born with certain ideas and conditions and that the medical community … I’m not trying to talk down about the medical community, but there's this message sometimes that "Your child will only amount to... fill in the blank.” It's like, "Wait a second. This is a tiny human. Who can determine what this tiny human will amount to?"

So our middle daughter Truly Star, she is now eight years old. She came home a week shy of six months old. She does not have any disabilities or special needs. She is Guatemalan and African American and my husband and I are Caucasian, our other two are also Caucasian. So she's the only girl in the family with brown skin and curly hair.

Then our son August, he is five, he'll be six in December and he also has down syndrome. We found out about him while his birth mother was seven months pregnant and we got to be with her those last couple of months in certain ways and got to be at the hospital the day he was born. He also had a congenital heart defect that's been resolved and he's totally healthy. We live in Southern California. They were all born in Southern California and that's where we live now. My husband and I run a social awareness brand called The Lucky Few with an emphasis on creating a more inclusive world for all of us. That's us in a nutshell. There it is.

Denaye:
Great. So I mean I think that tells us so much and as I was reading your book, I really felt like Macyn, since she's your oldest has kind of been one of your big teachers in life.

Heather:
100%.

Denaye:
Not that they all haven't been, but I just felt like I really wanted to meet her. Like I feel like she has the voice that you gave her and the personality that you sort of illustrated for her throughout the book, I think it made me really fall in love with her in specific.

Heather:
I love it. Even having two kids with down syndrome, she's 11 and August is five. And I have a podcast called The Lucky Few Podcast where we talk about down syndrome specifically. I always am referring to Macyn and I always have to be like, "I know I have another kid with down syndrome, but she's the oldest. She's the one that's paving the way for everybody. She's the one that we're learning with the most.”

Denaye:
Right. So tell me a little bit about what your vision for motherhood was before you became a mother. Like what did you think it was going to be like?

Heather:
Oh gosh, I had a really great, very clear vision. First of all, I always wanted to be a mom. That was the thing I wanted to do. So I was raised in a very healthy two parent home with a stay at home mom. And her being a stay at home mom is not why our family was healthy. You can have a very healthy family with two working parents. But that was my reality and my experience. So that felt like that's what I want to do. So I was just going to get married. I wanted three kids. That was always the number. I wanted them all before 30. And we got married really young. I was 20 years old when we got married. So I loved the idea of like being 37, having three kids, like being done with kids by then and they would all be healthy. They would all be "normal" and they would look like my husband and I. That was the plan. I'd stay home and we would do play dates and whatever. I mean, it was just like the easy normal plan. Not that motherhood is easy but it seemed easy, normal and nice.

Denaye:
Right. And you talk especially in the beginning of your book about how you sort of had these preconceived notions about working moms and the whole, the age-old working mom versus stay at home mom debate. I've talked about this a lot on the podcast too. It's something that I had because I was mostly a stay at home mom in my early years of motherhood. Now I would consider myself more so a working mom even though I do work from home. I feel I had all those same feelings and actually I'm going to read a quote from your book. You said, "The more I get to know these women…” And these women being the working moms. You said, "The more I get to know these women and watch them mother their kids, the more I realized they had so much to teach me about being a good mom." That's really impactful because I think you are able to see things from both sides of the coin now. I mean do you feel like you fit into either of those boxes, a working mom or a stay at home mom now?

Heather:
So my husband and I run our business together full-time and I always say we are full-time business owners and full-time parents. 100% parenting, 100% owning a business. So the lines are blurry but I 100% consider myself a working mom. I do remember in the early years of having kids, I mean I chose to be a stay at home mom because that's what I thought was best. I think especially the younger we are, we all do the thing that we think is the best and right thing for the most part. So I had a lot of judgment towards working moms. I remember my attitude towards it was like if we have to live in a one bedroom shack so that we have the money for me to stay home, that's what we will do. Like if we have to move in with my parents so that they can have a parent at home, that's what we'll do. Why have kids if you're not going to be home? I mean that was me, just being very transparent. That was a lot of my conviction.

Then I surrounded myself by people with the same mindset, which is what we all tend to do as humans. That's what we tend to do. Then when my kids were under one, three and five, we moved to a new city and I became friends with a bunch of women who mostly didn't have kids, a handful who did. But as they were having kids, they were going to work. One of my very good friends, her mom worked. So she's like, "Oh yeah, my mom worked my whole childhood and my childhood was great. My mom was awesome. Of course I'm going to work." I thought, "Whoa, that feels radical to me." It was one of those, like I always say in my 20s, I knew everything and now I'm in my 30s and I know nothing. I really stand by that, like I just was a know it all, I knew everything. I think the younger we are, the more we think we know. And the more life experience we have, we realized that we know nothing. And there was so much to learn and that's what it's been like for me as a parent.

Heather:
It's like, wait, people who choose to go to work full-time and have someone else care for their child during the week are good moms. Right? Like stay at home mom doesn't equal best way to be a mom. I think that there's lots of layers there too. Like let's talk about single parents. Let's talk about parents raising children with disabilities. Like you can bring in so many pieces. Let's talk about women who are the main breadwinner in the family. There is not one right and best way to be a mom.

Denaye:
Do you think that there's a hardest way to be a mom? Because sometimes I feel like these different groups kind of wear this badge of sort of, I've got it the toughest. Sort of like, I'm a working mom, I'm the busiest, I've got it the hardest, I'm a stay at home mom. Does that resonate? Or I'm a special needs mom and like my load is heavier than yours. Do you feel that sentiment?

Heather:
Yeah, I hear totally what you're saying. I think the hardest type of mom to be is to be a mom who loves her child fiercely. Then that is the hardest kind of mom to be. You can be anything under that umbrella, you can be a lot of different things.

Denaye:
Yeah. To love your child fiercely and also to love yourself and be able to find and seek the things that fill up your cup so that you can do those things simultaneously, which is not easy.

Heather:
Yeah. To maintain health as a mom. To maintain your own personal health in some miraculous way. Then you can be a stay at home mom. You can be a mom to the kid with special needs. You can be a single parent, you can have 20 kids. Like hard is so relative, it's so relative. Because then you want to like, "Okay, let's talk about the hardest kind of mom. Let's go into some third world countries where women are losing every other baby at birth." If we want to go down that path, let's go down that path. So I don't think that there is a hardest way to be a mom.

Denaye:
Right. I wished more than anything that we didn't feel like we needed to compare the weight of our journey with one another. But I think that in some ways I see women in parenthood sort of finding some validation in how much weight they're carrying.

Heather:
Yeah. I think a lot of that is just because we live in a culture that is driven by performance.

Denaye:
Yes.

Heather:
So if we live in a performance based culture that's going to feed into how we parent and I think we need to be cautious of that. That's where comparison comes in and that's where we feel better than somebody or worse than somebody. As moms the only thing we should be doing is cheering each other on. That is it. And supporting each other.

Denaye:
Yes, I completely agree. So Heather, I had this experience this summer. I want to share the story with you and I want your reflections on it. This is what really inspired me to want to talk more with you. So this summer, it wasn't like a huge life changing experience, but it was just kind of something that got my real spinning. So my kids and I were at the pool and there was a little girl, she's probably about nine years old. She was swimming like a fish all over the pool. And my kids were noticing her because she was swimming so well. She jumped out of the pool and my son, who is the kind of kid that just likes to talk to everyone. He went up and started talking to her and she sort of looked away from him and didn't respond and went and sat down with her caregiver who I thought was her mom at that point, but I wasn't entirely sure. So she went and sat down on a chair close to us and picked up an iPad and started communicating with her caregiver via iPad.

My kids noticed immediately mostly in envy because they're like, "Well, why can't I have an iPad at the pool?" But also in curiosity. And I was sort of torn because my gut tells me that my son tried to talk to her and I want him to be able to talk to her and I don't want to tell them to look away. So what I ended up doing was I took my son over and I approached her and started to talk to her and her caregiver. And just asked for them to explain a little bit about her iPad and just asking some normal questions about herself, like what her name was and how old she was. She started talking to us with her iPad and it was great. I think it was a really cool experience for my kids. To them I honestly think they just thought like she was just another kid, she just had a new way of talking, which they thought was pretty cool.

But I find that I'm a little bit uncomfortable in those situations, mostly because I'm worried that I'm going to say the wrong thing. I mean, I feel like I'm not alone in this. Just in the world that we're living in today, I think that there's this push to be so politically correct all the time that it's almost scary to even talk.

So I run a homeschool group and we were doing this activity where we collected feathers and we glued them on to brown paper. The activity in the book was called head dresses. So I said, "We're going to make nature head dresses." And one of the moms private messaged me and was like, "Hey, can we call them something else other than head dresses?"

Then all of a sudden I panicked and I was like, "Oh my gosh, head dresses is offensive. I didn't even know it was offensive. Like, what else am I doing that's offensive that I don't know." So now I feel like I'm in this position where I'm always on guard of saying the wrong thing. I'm worried about using the wrong words. I'm worried about asking her about her disability instead of asking her about her strengths. I just want to say all the right things and I don't want to say anything that could in any way be hurtful. Does that resonate at all with you? Do you get that much?

Heather:
I've got so much to say.

Denaye:
Okay, great!

Heather:
And not that I have all the answers, but just from my experiences. So let's go back to the pool and then I want to talk about the head dresses thing too. But I think what you did is exactly what I would coach someone to do as someone who has a child with a disability. I think when we are very uncomfortable and the truth is we are uncomfortable with the things that we don't know and understand, that's being a human and that's okay. I think everyone needs permission to feel uncomfortable. It's okay to feel uncomfortable. Even when you're talking to your kids about being around people with disabilities or people who are significantly different than them. And as they're older, the older they get, the more uncomfortable they will be, which is why it's really imperative to just start the conversation from day one, just start the posture and the culture of difference in your home from the beginning.

But if you haven't and your kids are older and they're uncomfortable, that conversation of it is okay to feel uncomfortable. I feel uncomfortable when I'm around someone who's different and I don't understand them or I don't know how they're going to respond because they're so different from me. I feel super uncomfortable. Then just a real quick aside, making sure that your kids know the difference about being uncomfortable because they're in danger. I'm real big about, let's talk to our kids about that it is okay to be uncomfortable. That we have to let our kids be uncomfortable, but make sure we make that distinction that if you're uncomfortable around somebody because the way that they're responding to you is like they're in danger like in terms of like a sexual predator or whatever. So that's just an aside. Just differentiate the two for your kids. Keep your kids safe. You know what I mean? Does that make sense?

Denaye:
Yeah. Because I think we could easily group that together.

Heather:
But what you did is... and I think there's two ways people can respond. People can respond by turning away or people can respond by leaning in. So when you're feeling uncomfortable in that kind of a situation, are you going to turn away and walk away? Are you going to lean in? Turning away and walking away is a safer thing to do. That is safe, you walk away, you don't have to worry about it. It's not your problem. But it's also when you choose to turn and walk away, you're also missing out on furthering yourself and your children as human beings, making ourselves better human beings. It's a missed opportunity for learning and growth.

When you lean in, you have an opportunity to learn and grow and it's super risky. Because there was a very good chance that when you went over to talk to this child and their caregiver, that they were offended or that they felt irritated by you or it was like go away, quit talking to us or whatever it was. It sounds like the story ended, like most stories end with an opportunity to create a relationship with somebody who's different than you and they're open to it and you're open to it.

Denaye:

You hit right on my fear, that was that they were going to be uncomfortable with us approaching them.

Heather:
That's the risk that you take when you lean in. But in my opinion, all things worth doing in life require some kind of risk. So if we want to make this world more inclusive for our kids and which I think most people do. We want to create a kinder world for ourselves and for our children, then we're going to have to lean in and we're going to have to be risky. And approaching someone who has a significant difference is a risky thing. I think that you need then to be careful how you approach them. So like you said, we asked about the device and we asked normal questions like, "Hey, what's your name?" And that is like my big piece of advice to give to parents who have the question of like, "What do I do if I see your kids at the park or somebody who's in a wheelchair or somebody who's...fill in the blank.” You walk up and you say, "Hi, what's your name? My name is Heather."

That simple phrase has so much power to connect us and maybe it ends there or maybe it opens up to, "Why are you in a wheelchair?" That's what's so great about kids is kids will just ask the question in a way that's real innocent and well-meaning. I think we need to lean into that too as parents instead of like shushing them and saying, "Don't do this."

Denaye:
Right. So let's stop right there and take that question because I feel like that is enough to just sort of like send a lot of parents off the deep end and feel like they've offended someone. I mean, do you just go on and like let your child ask that question? Do you think? What are your thoughts?

Heather:
I think so.

Denaye:
Or do you apologize for the question?

Heather:
No, I don’t think so. Then I think the apologies and the teachable moment comes later when you're away from the person. I don't think that you want to have a teachable moment with your kid where you are telling your kid the right way to ask a question or the right or wrong way to approach somebody around the person because that just gets awkward. You're are raising the bar of awkward discomfort. That's my opinion. People may not have that same opinion. But I mean this is a reality for us all the time. Kids will walk up in the park and my daughter Macyn who has down syndrome, she has low tone and often her tongue will be out.

And it's like, "What's wrong with her tongue?" I'm like, "Oh yeah, she has down syndrome, which means she has low tone and our tongues are muscles and so her muscle tongue is not as strong so sometimes it sticks out." Usually kids are like, "Oh, okay, cool. Want to go swing?" If a parent comes up and is like, "Oh my gosh, I'm so sorry. That was so rude." Then that also communicates to my kid who's there listening and is very well aware of what's happening around her that something was bad in that. That there's something wrong or bad in asking questions.

Denaye:
Do you get that apologetic response often from parents?

Heather:
Yes we do. Parents will apologize for their kids often and I mean I get it. I do the same thing. I'm trying to think of examples, but I mean I do a similar thing. I think that again it... Like I said, this I'm repeating it a little bit, but when you create a foundation of difference in your home then when your kids step out of the home, the interactions with people who are different are going to go much more smoothly. So let me give you an example. If in your home you have a variety of toys who look different, the books that your kids are reading are diverse in ability and race and gender and the heroes of the book have a disability or the heroes of the book are a different race. You're watching shows where that's the case and you're not just creating a homogeneous field within your home, but you're creating a diverse, inclusive feel within your home, then kids are going to talk about differences.

So we have a book where the main character has limb differences and is in a wheelchair and missing an arm. So then when I open that page and there's a picture of this girl who's the hero of the story, so it's not like we pity her. Then my kids are like what happened? So we've had that conversation. So when we leave our home and they see someone, it's like, "Oh yeah, that's like that character Emma from the book." So we have the power and the tools to set our kids up for success in these spaces. We just have to be very intentional about it. Then a quick story about that. So differences are evident in our home. It's just the fabric of who we are and that's all our kids know. But we talk about it a lot and we talk about our differences. And my middle daughter Truly will, from two years old, bring up the fact that she's the only one in the family with brown skin or she's the only one in the family with curly hair.

We have these conversations and something, the foundation of our home is everybody's different babe and that's what makes the world so awesome. So when she was four, we were at church and we pass a man and he has a port-wine stain mark covering half his face. So the majority of the right side of his face had a purplish, bluish mark on it. And she's four. So he walks by, she's never seen this before. She just points and says, "Mom, what's wrong with that guy's face?" So I could just be like, "Oh my gosh, I'm so sorry. That was humiliating. Truly don't you ever do that again." But because of the foundation we've laid as a family, I was able to say, "Oh yeah babe, he has a mark on his face because that's just his difference, remember everybody's different." Then she can go, "Oh okay" and we just move on.”

Denaye:
I think that's a really good simplified way of communicating it. That it feels non-threatening, especially if the other person is overhearing the conversation.

Heather:
And the person overhearing, trust me it's not the first time. Like you are not the first person or your kid is not the first person to point something out that's different about them. Our kids, when we walk into the world with our children, we know that we are different. What we want is for people to embrace us, not to turn away from us. And part of that embrace is asking questions, is letting our kids ask questions, letting ourselves ask questions and learning alongside each other instead of trying to separate ourselves from people who make us uncomfortable.

Denaye:
Yes, and actually this makes me think of a couple of months ago we were at Starbucks and we had recently... we have a book called My Dadima Wears a Sari. Which is a story about an Indian grandmother that wears beautiful saris. And shortly after we read this book, we saw a dadima wearing a sari or a grandmother wearing a sari in Starbucks. And my daughter was just completely taken with it and it's like, "Look, it's the dadima." My reaction was kind of, I didn't shush her, but I said, "Wow, isn't it so beautiful?" I tried to appreciate it, but I also wasn't entirely sure if she should go up to her because she wanted to like go up to her and like look at it closer and touch it. It's so hard, I think as a mother to sort of weigh this. I want her to recognize beautiful things and it absolutely was something beautiful. But at the same time, I also don't want to alienate this woman or make her uncomfortable either.

Heather:
Yeah. I feel the same way all the time. I think that you have to trust your gut and discernment. If  you're doing the hard work and you know that your kids, like you're working towards inclusion and you're working towards kindness and that kind of scenario. It's like, "We're just here to get coffee. Let's just get coffee." I think you just use your discernment. You know what I mean? It probably would have been great for your daughter to walk over and say, "I love your sari, it's so beautiful." But to not do that is fine too. You know what I mean?

Denaye:
Yeah. Like I said before in my ramble that I feel I'm so fearful of saying the wrong thing.

Heather:
Yeah. I think again, you can either lean into that and have opportunities for learning and growth or you can step away from it and stunt your growth as a human. So I'm all about like, let's lean into opportunities to learn and grow. And part of that is taking a risk and we're going to say the wrong thing. But I think it's important to check your heart and to make sure your kids know that we're not making spectacles of people who are different than us. And it is a fine, a blurry line to figure that out. Like when you see someone in public who's very different and you have questions. Maybe they want to be left alone and that's their right. They shouldn't have to constantly answer questions about their differences in a public space. But if you lean into it and then that's the reaction is they're offended, well then you took a risk. But you might lean in and there might be opportunity for an incredible conversation for you to learn and grow. That's just my thought.

Denaye:
Yeah. No, I love that. I think that's really helpful. Something else that really struck me in your book was you talking about the discomfort that you felt originally. It sounds like you've worked through this of your kids interacting with other people in public and feeling like they were bothering others, which I feel like this kind of goes on both sides of the coin there.

Heather:
Yeah. I tell a story in my book about Macyn asking people their names all the time in every space that we're in, in a way that it made me feel really uncomfortable. So like for example, being in a restaurant and from the hostess booth, let's say our table's at the very end of the restaurant, Macyn is going to approach most tables between the hostess booth and our booth. People are in the middle of meals, in the middle of conversation, she doesn't care, she just wants to interact with everybody. So she's asking everyone their name. I used to be embarrassed, want to pull her away, want to shush her. Then through a really great and healing conversation with a friend of mine, I was like, "Wait a second. People's reaction to my kid is not my responsibility.” Macyn walking up to a table of people eating and interrupting their dinner, while it's not the social norm, it's actually not rude or terrible for her to do that. It's just different. That's who she is and that's what she wants to do. She brings to the world something very different and I don't need to squelch that. I need to let her bring it. So that's what we do. I hold all of that very loosely and I really have learned to celebrate her responding to the world in a way that is not the norm. And it takes some people by surprise, but they're either better off for it or they're annoyed. Neither is my responsibility.

Denaye:
What do you find is the more common response? Or is it just all over the board?

Heather:
People love it. I've never had anybody be annoyed, like openly annoyed by it. It's like people totally engage it and want to talk to her. But she's not really interested in talking to you, she just wants to know your name and then she's kind of moving on. Or people just like saying their name and then that's it. Then we move on. Or the third reaction is like a side-eye trying to avoid her or pretending like they don't hear her and that's fine. It's just not necessary. So like the pulling people away or like a mom pulling her kid away and pretending like they don't hear her for the fourth time yelling at them, "What's your name?"

Denaye:
Yeah. It's interesting that for... it sounds like for some period of time that you may have been the most uncomfortable person in the room over this rather than the other people. And it was sort of, you can't see the... What is the quote? You can't see the forest through the trees or you can't see the forest for the trees? And you sort of had this aha moment that it actually was something that you can embrace which sounds just so life changing.

Heather:
Yeah. And it's a fine line. It's totally life changing. There are fine lines between behaviors that are unexpected and when we're in public, we're not going to have those behaviors. Like that's just raising kids. But when you have a kid who has significant differences just in the way that they process the world, that's a fine line to try and navigate. I make mistakes there all the time.

I'll just tell this quick story. We're at a new church, we moved about a year and a half ago and it's very small. There's about 100 people max on a full Sunday. And during worship when people are singing songs, there's usually one person with a microphone and a guitar. She will sit in the front row and sing at the top of her lungs so, so loud and everyone in the room can hear her. And my knee jerk reaction for a second always is to be like “Macyn, quiet.” Like you've got to sing more quietly.

So for me, I'm constantly learning. Like I remember, "No, this is who she is and everybody in here is better off." And yes, she's totally off key and she is the loudest person in the room, like louder than the person on the microphone. So I just kind of let it go. Then I'm getting text messages from people at church that are like, "Today Macyn wasn't here, but I want you to let her know that I sang as loud as I could today because I was just so inspired by her." Like people are coming up after church with tears because they've just been so incredibly blessed by her.

Denaye:
I love that.

Heather:
Yeah. I have to constantly learn to lean into who she is because it's different.

Denaye:
Right. You talk about her adventure into the dance community and how you met a dance teacher who was so supportive and just really a game changer for your family. It makes me think about this fear of doing the wrong thing or saying the wrong thing. I think that for anyone out there listening that's a dance teacher or a soccer coach or anyone that's leading groups of children that has the opportunity to invite a special needs child in, what words of advice do you have for them? I mean, how can they help to scoot over and make some room and to bring this inclusion into these group environments where special needs kids are so often alienated?

Heather:
Yeah, I think that like in terms of doing the right thing or the wrong thing, the wrong thing to do is to say, "No, this person can't be here." I also understand that you get to a certain point when kids are older, where people are trying out for teams, like there's a skill set that is needed for a certain sport to be a part of it. I understand that. I don't know how to fix that, how to make that space more inclusive. But when we're talking--and I know most of your audience has little kids—that should not be the case. In any little kids situation, like everyone's allowed. So the wrong thing to do is to want to create a separate special class for that person. Then the wrong thing to do is to see their difference as a disservice. So the other way to say that is the best thing you can do is approach that person, see their disability.

Don't ignore it because it's a part of who they are. It's an important part of them and it will affect them in the program. Then see it as an asset. So when Macyn goes to dance class, the fact that she has down syndrome and she approaches dance so uninhibited, that is an asset, her down syndrome is an asset to this. So if someone comes to your sports team and they have autism or they are... whatever it is. There's a million things it could be, whatever that thing is, see it as an asset to your team. Then when you say that, when you say, "Okay, this person's disability is going to be an asset to our team," it's easier to get creative and flexible and make room for them. I think it's like a posture of the heart. I think that's the biggest most important piece.

Denaye:
Yes. I think and I'm hoping that we have the opportunity to involve my kids into an activity like this with children who look different and speak different. Because I do think that not only does it provide more opportunities for special needs children, but also for my kids because it allows them to embrace kids with big differences. Which I think leads them to be more open to embracing kids with little differences too. Kids who look and act the same way as them but maybe have a hard time reading or maybe have a speech impediment, something that is maybe smaller and not as noticeable. But I think there's so many kids with little learning differences or intellectual differences that get bullied and they get picked on. I feel like if we can show our kids ways to embrace all sorts of kids that maybe it can just become more of the norm.

Heather:
Yeah. And the younger you start, the more normal it is. That's why I think it is imperative to make sure that when you have young kids, you're fighting for inclusion for them to be in inclusive spaces because it will change them as a human being for the better. And if you start that in fifth grade, you have so many walls and barriers and layers to break down in your kid and their idea of difference than if you start when they're in preschool and when they're younger. And making sure, like I'm fighting for inclusion for my kids, I'm an advocate for inclusion, but I really encourage and believe that parents who only have neurotypical, able bodied kids should be fighting for inclusion for their kids because their kids are going to be so much better off as human beings for their lifetime. And the skill sets they're going to gain because they know how to do life around people with disabilities who are different than them and it's all they've known. It's just going to make them so much more qualified to do life however they're going to do it.

Denaye:
Yes. I love that. I think that is inspiring and I think thought provoking for so many of us out there because I do think that many of us who are not raising special needs kids can easily tune out the special needs community if we're not intentional about it.

Heather:
You have to be super intentional. I think that's kind of where the rubber hits the road. Like it's not just going to happen to you. I get asked all the time like, "Where can I find kids with disabilities for my kid to be friend with?" Like, oh gosh, do you hear that question? That's a really strange question. However, there are resources but you're going to have to be so intentional. Do you want your kid to be a great gymnast? Then what are you doing for your kid to be a great gymnast? You're being incredibly intentional in that specific space. So if you want your kid to be super kind and inclusive, then you're going to have to be very intentional to create space in your life for people who have disabilities.

Denaye:
Good. Okay. I'm hoping that a lot of people out there listening are sort of getting the wheels spinning in their minds and thinking about ways that they can start doing this. Even if you're already doing it, maybe doing it more often and in new ways. I'm hoping to hear from anyone listening that has had experiences like this or ideas that might be helpful to the rest of us too.

Heather:
Yeah, for sure.

Denaye:
Well thank you so much for this Heather. This has been really great and I've loved our conversation. I'm hoping that lots and lots of people will check out this book, Scoot Over and Make Some Room because I think like I said, that many of us who are not raising special needs kids can easily tune out the special needs community if we're not careful. I think your book is a really good bridge for all of us to join together and to start talking about this.

Heather:
Awesome. Thank you. Thanks for saying that and thanks for having me on the show.

Denaye:
Thank you. I hope you've enjoyed this episode. If you want to stay in touch with Simple Families, hit subscribe so you get all of the latest episodes. We are going to two episodes a week coming in January. You can also go to simplefamilies.com and leave your email address. The email list is the best place to stay in touch for exclusive updates, what's going on on the blog, the podcast and the community.

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Denaye Barahona

Dr. Denaye Barahona is a loving wife and mama of two. She partners with families to tackle the challenges of raising children. Denaye is a minimalist who claims to be a decluttering expert (don't let her near your closet). She loves to travel, talk health-and-wellness, and give unsolicited advice. She has been featured on the likes of The Today Show, The Wall Street Journal, The Huffington Post, The Minimalists, Motherly, Becoming Minimalist, and numerous other media outlets. Denaye holds a Ph.D. in Child Development and is a Clinical Social Worker with a specialty in child and family practice.