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
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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.
