Ep. 7: Educating Others About Your Child’s Differences w/ Emily Young

Episode Transcript

Madeline Cheney  
Emily, welcome back to the show.

Emily  
Thanks for having me again.

Madeline Cheney  
Okay, we're going to talk today about educating others as your special topic, which I love since you are a special education teacher, so educating someone just makes so much sense for your topic. And what is your purpose and educating others about Nora?

Emily  
I think my biggest goal when I'm educating about Nora is for people to understand that just because she's small, it doesn't mean that she isn't capable. Even now at two I find that people think of her as a baby, not a toddler, even though she's walking around and talking and communicating and that initially when people see her they just Oh, what a cute little baby which is nice. I know. They don't mean any harm by it, but it just kind of gives me a glimpse into the future of what people are gonna think given her size, and she'll never really be average height. So I worry that people will think because she's small, she's not capable, or that she's much younger than she is not smart. She doesn't understand what people are saying. But she does.

Madeline Cheney  
Right, they assume these things just because she's small.

Yeah, yeah. So I think I'd like people to understand her better and kind of, accept that just because she's small, doesn't mean she can't do everything you or I can do or the same things that every average two year old can do. She might just have to do it a little differently.

Hmm, yeah. What does that look like when you are in public and someone makes a comment and you decide that you do want to educate them. What does that what's like a common scenario with that?

Emily  
So I can give you an example of a time at the public library in town. And we had several encounters, actually, to the point where it almost became uncomfortable. And nobody was meaning any harm by it at all. But we walked in and one of the people working there had said, I think that's the tiniest human I've ever seen walk through these doors, and I know what she meant by it. But in my, my mama heart, I was like, oh, man, it just kind of hit me wrong. And so I kind of walked away from that one. I let that one go. Which I do. Sometimes. Sometimes I don't. And then as we were leaving the same, the same place. We were in the parking lot, and another very nice older woman just came up to us and started talking and said, Well, she's so small. So tiny, how is she walking? And so I explained and I said, Well, she has dwarfism. I said, she's a little person. I said, She's always going to be smaller than the average sized person. And she just looked at me and she said, Oh, okay, and that was it. And then I could have said more. And sometimes I do, but in that case, I kind of left it at that. Nora had just turned two at the time and I kind of could see the like, the wheels turning in her head, like she knew we were talking about her. Did she understand all the things that we were saying? Probably not. But it kind of hit me that small, tiny, all these words that people are using to describe her and I just I got worried that--How is she attaching those things to herself and those words. So now that she's getting older, I feel like I have to pick and choose a little more how I communicate with others and others about Nora so that she can pick up on what I say and hopefully use my words to start advocating for herself. So when someone says, Oh, what a cute baby for her to say, Well, I'm not a baby. I'm two. Or kids at school because she goes to daycare three times a week. You know, if kids are calling her a baby, what she can say, things like that. So it gets, it gets tricky. I mean, there's certain times I have the energy and I feel like explaining her whole story if people seem willing to listen or accepting of listening. And then there's other times that I just short and sweet, and we go on with our day just to keep it as normal as possible. It can change too, depending on if my son is with us or not, how I react to others. 

Madeline Cheney  
How does that look? So if your son's with you, how do you alter or modify it for him?

Emily  
I think I read, I usually will read him, I can tell by his face his level of comfort. So if he's feeling like, he'll give me this look like, aren't you gonna say something? Like someone, someone just commented on her, you're not gonna say anything? And then I kind of feel like I have to just to model it for him. And then there's other times that he'll just come out and say it himself. Well, she's small, she has dwarfism. She's fine. She can walk. She's, she's great. Um, so that also depends on the situation. There's been a couple times where people were a little more aggressive with their words, I guess is the way to say it. And we both looked at each other and kind of chose to just walk away at that point. He's also very sensitive to what people say to her. So we also have to be careful about how how I react when he's around.

Madeline Cheney  
Have you guys had to open discussions about educating others? And what have you told him about that?

Emily  
Yes, we have we, we talk about all the time, actually. And he talks to her about it a lot. The other day, actually in the yard, he just turned the her and he said, Nora, you have dwarfism, you're gonna be small. And that was it. That was like you, you're gonna be okay. Like he so he has his own conversations with her about it. And we've always been very open with him about what it all means. And he he has when she was first born, so to you know, two years ago, he was a little bit younger. He had lots of questions like, can she go to school? Will she have babies? Can she get married someday? Can Nora play soccer? Will she be--Could she be a doctor? So we talk a lot about how just because she's small, doesn't mean she can't do any of the things that you can do. She might just need to do it differently or might need some help with it. So he kind of uses those phrases to with other people and if people call her a baby, he'll say she's not a baby. She's a toddler. That's kind of his thing. Or he'll just come right out and say she's a little person. She has dwarfism. She's small. 

Madeline Cheney  
So Emily, your blog, mylittlelove.net. You previously told me that that was inspired by the lack of positive information on the internet when you first found out that she probably had that while you were pregnant with her. Can you tell me more about that?

Emily  
Yeah. Like, yeah, like I had said before, when we first found out about Nora's diagnosis or possibility of diagnosis. We did a lot of research on our own, which we definitely shouldn't-- I do not recommend that. I don't recommend googling things. It's very hard not to. But both my husband and I spent a lot of time doing that and not much positive information or encouraging information came out of it. It made us more scared and more worried. There wasn't a lot of information easily found from parents that had experienced what we were going through. So the blog was kind of a way for me to process everything that was going on while writing it out. But it was also, even more importantly for other people to hopefully find honesty, our honest story, but also encouraging and positive things. So not every blog post is positive, because there are some challenges that we've had with Nora as well. But I try to be honest and encouraging at the same time to show parents that everything will be okay. And then there's more out there than the negative statistics and a lot of the things that the doctors told us that she can't do or won't do so that parents can have something a little bit more hopeful. So that was the main purpose. That's also how--the blog was also how we kind of spread the word about Nora. We hadn't told anyone but immediate, or, I should say, extended family, close family about Nora when she was born and a couple close friends. It wasn't something we shared with everybody at first. So the blog was kind of a my way of doing that too, I guess. 

Madeline Cheney  
So did you direct people to it like, Oh, it's in my blog. You can read about it there.

Emily  
Yeah. So actually, yeah, just my first post. I posted it on social media. So people outside of our immediate circle would would know about Nora, so I wouldn't have to have that awkward conversation about it, I guess. And field a lot of questions and it was-- I'm kind of a shy person. So this was a way to put it out there but not have immediate feedback right away because I was still processing and it was only two and a half months after she was born. So I was still trying to figure it all out myself and in our family, we were still trying to process everything and help Nate through it and all that. 

Madeline Cheney  
Did you receive positive feedback from that? Or were some comments hurtful? How did that go?

Emily  
It actually went really well. We got I got lots of positive feedback both about my blog writing and about Nora, and about appreciating that I was sharing and educating about her. So many people have never met someone like Nora. I'm the only mom and of all my friends that have a child with achondroplasia and before Nora we we had only bumped into one person one little person before we had Nora so it's so rare that I was hoping that the blog would kind of spread awareness and acceptance so people would understand her better and make things easier for her down the road too.

Madeline Cheney  
Yeah, and that kind of goes back to your educating even strangers at the store right where if they are one of those people who are willing to listen or you feel like talking about everything, what is your hope for those people and how that might affect the world as a as a whole?

Emily  
I guess my hope is that they'll just see Nora like it like everybody else. Like we have encountered a few things where you know, people point and stare and--not at Nora specifically, but at other little people that we've become friends with just that people treat people with differences, not always in the nicest way. And I don't want my daughter to--I know it's inevitable and it's going to happen but I feel like the more people that understand and accept her and realize that her differences don't really make her that much different than us that she will come across less bullying or less pointing and staring and people will just ask questions and say hi and treat her just like every other person should be treated.

Madeline Cheney  
Yeah, yeah. I also I like picturing that like, as we do educate other people or just help them see like, yeah, they're this awesome person, just because they're different than you or your child doesn't mean that they're not amazing and have a lot to offer. I love the idea of people, then (maybe someone who's who's interacted with you and your family) down the road, meeting another person, another little person, or, I mean any kind of, you know, disability or difference and be like, Oh, they're like Nora, like, Nora was totally--Like, I love Nora. They're like, there's, she's wonderful and amazing. And so I don't know, almost like, also just the shock factor is like less there. Because I think, honestly, that's probably the biggest struggle is just being like, Whoa, they look different. And so I don't know. I like the idea that the more interaction she has with other people and the other on all of us that as our children interact with the world, that they're just less like, surprised to see. Wow, there's someone who looks different than me. There're a lot of differences in the world and variety.

Emily  
And kids, I think kids especially just say what they see. They don't have a filter. So it just comes out sometimes. And if parents can just kind of help them through that and have, you know, help them figure out that it's not such a big deal. And the parents reaction also matters, because the kids will, kids will feed off of that. So if you're being respectful and kind and just treating them treating kids like Nora, just like everybody else, that your kids will see that too. And, you know, they'll just treat people kindly. It's just...

Madeline Cheney  
Yeah, I love that, that example is so powerful. I think that's even. I don't know, sometimes even as an adult, I think sometimes we don't totally know how to act around someone who looks different or acts different. Like, I don't know, like, sometimes I'm like, Oh, I shouldn't stare and like, wait, now I'm ignoring them. You know? I don't know. What would you say the bottom line is for as a guideline for showing a good example for your children?

Emily  
I think I think just-- if you if you model how you would want to be treated, I mean, if you were the one with the difference, how would you want people to react to you? It definitely can be awkward. You're not sure what to say and you don't, you know, you don't want to stare you don't want to point but if your kids have questions, I think you should talk to them about it, not just shush them and say, we're not gonna talk about that. And just kind of ignore it. I think it's really important to let them ask you questions about someone with a difference and then just kind of process it through with them. Just say hi, give a wave, it's, you know, doesn't have to be awkward. And just, I think the more we can model that for our kids it's gonna spread.

Madeline Cheney  
Yeah, like thinking. Like even with Kimball's hearing aids, for example, that's something that really stands out because honestly, so he's little too, but he's also doing all the things that a nine month old would do anyway, so his tiny size is like, I don't know, like, I don't think his size really gets people but like things like his hearing aids, a lot of little kids will just come up to us and be like, What are those? And I'm like, I'm so happy to tell you about hearing aids. Like, I think it just--asking a question instead of, like, you said, shushing like, I think that more respectful because it's like, it's not, when you Shush. It makes it seem like it's this dirty, bad thing. Like, Oh, don't say that. That's insulting, like, No, it's okay. Like, we can talk about it. And, I like you said, I like how you you mentioned like, with the librarian, where you were, like, not in the mood, not gonna, you know, you don't have to always be educating but you can when you want to.

Emily  
Yeah, I do tend to educate more, I'd say with kids than adults because I feel like kids are so impressionable. So Nora was at dance class a couple months ago and one of the little girls just looked at her and then looked at me and said, Why is her head so big and her arms are so short? And I was immediately wanted to protect Nora from that--she was oblivious. She was spinning around dancing. She didn't even really notice. But my immediate reaction was Don't say that about her like in my head and and then I realized, you know, this child is only about five or six years old. This is her way of, of wanting to know, she wasn't it wasn't--It wasn't a teasing situation. It was more just pure curiosity. And so I just explained to her I said she has dwarfism, her bones grow differently than yours. And that and that was it and she was fine with that. And she was just said, Oh, and they went about their business dancing in the hallway waiting for class. And it was fine. So I think kiss I'll definitely if a kid ask the question, I feel like I always stop to address it because I feel like it's really important for them to understand.

Madeline Cheney  
I love that.

Emily  
And then the next time they see someone with a difference, whether it's like Nora's or not, they can remember that conversation and just remember, well, her bones go grow differently. Really simple.

Madeline Cheney  
Right? Yeah. And I think that even could apply. She might even apply it to anyone that has any kind of difference. Like physically or mentally, she might just think, oh, they're just formed differently, which is, yeah, I feel like that's a really good explanation for a lot of different disabilities. Really quick as a side note too. So we're both members of the same Facebook group for parents of little people, which is how we met, I think, I saw a post about a parent that was really upset because someone called her child a midget. And people were calling it the M word. And I was like, I didn't even know that was disrespectful or offensive. Can you explain a little bit about I think I was like, I don't even know this and I have a child who could be targeted with this. So if I don't know just for public statement, can you explain how that's not the best thing to to call a little person? And honestly, for me, I am curious.

Emily  
So there's actually, through that group, there's been lots of parents that before they had a child with dwarfism didn't realize that that word was hurtful. I've always disliked that word, even before Nora. But now that Nora is in our life, it means that much more to me, that we don't use that word and that's actually something that we've taught our son to and he's actually let other kids know that that word is just not something that's nice to say to anybody. So that word was used a long time ago. And it was seen as okay to use. But the LPA (the little people of America Association), they fought really hard to get that word kind of dismissed so that it wasn't used in in general language anymore. There's still a lot of like sports teams and things like that around the country that use it in their name. And a lot of schools are starting to change their names so that they're not using the word midget. 

Madeline Cheney  
Interesting. Okay.

Emily  
It's considered derogatory for little people. And from what I've learned in the past two years is the best way to address someone with dwarfism is just to call them by their name. That's the best way to speak about them.

Madeline Cheney  
I love that. Yeah.

Emily  
But if you must use a label or another term, little person is the next next best thing. And there are some little people that don't mind being called dwarves. We don't use that in our house, really. But there have been some adults that I've met that have been okay with that term. But it can be used in hurtful ways. A lot of times I don't know if you've ever seen like, midget wrestling or there's been things like midget tossing and kind of sports related entertainment. That the LPA has really worked hard to kind of get that word, just out of everyday use. 

Madeline Cheney  
Yeah, that makes sense. It is just it's the connotation of it that's negative.

Emily  
Yeah. Especially the way that you use it to just means a lot.

Madeline Cheney  
So have you have-- So, like I said, the example I used was a another mom who had their child was called that. Has that ever happened to Nora?

Emily  
Not yet.

Madeline Cheney  
What is like your plan? Like, do you have like a plan of what you're going to respond with?

Emily  
I do have things that I would like to say, but I feel like in the moment, if that was to happen, I don't know that it would come out quite the way I have it planned. Um, it makes me really angry to think about that time. And I really worry about, you know, her going to school when she becomes school age and, and kids using that word or, you know, teasing her about her size and things like that. So I do have this plan this grand plan in my head, but I'm not sure it would really play out the way, the way I have it planned.

Madeline Cheney  
I am really curious what your grand plan is because I think that this is a unique struggle for these kids that have, like, I mean Kimball and Nora are similar in that way where they have these physical differences and you know, disabilities, but are cognitively aware and so that they will--so unlike a child, I don't know maybe with like Down syndrome or some kind of, you know, cognitive delays where they might not pick up on bullying or like mean things that people would say, but I don't know. They'll totally, they'll pick up they'll know that people are being mean. Oh, it kills me. Like you, it makes me angry to even picture that day, but what is your...What do you call it? Your?

Emily  
My grand plan? 

Madeline Cheney  
Yeah! What's your plan?

Emily  
Um, I think I would...I think I would just say sit her down. And I'd focus on her first. And just remind her that those words are not what describe her and try and build her up. Like I think we're doing that now anyways, I'm just really focusing on wow how strong you are and, and how smart you are and not really focusing on her size. Not that I don't want her to accept her size, because that's going to be part of her forever. But I don't want her to think that that's all she is. And I don't want her to eventually when those things do come up, and kids are saying mean things, I don't want her to only attach those words to herself. So as far as that part of my grand plan, I would focus on her. As far as the target or the aggressor, whoever is using that word or otherwise to tease or bully. I definitely see myself walking into school and having a big meeting and addressing it head on. I do plan on addressing it ahead of time before something happens and just letting her school know what's acceptable and what's not acceptable.

Madeline Cheney  
Hmm. I hadn't thought of that, that's a super good idea.

Emily  
Before it happens. But I, my plan would be to have a pretty good sized meeting and, and talk about it and address it with the child or person that was using that word or teasing or bullying and just not not, that's not something that I would let go. Yeah, that would be a definite educational opportunity.

Madeline Cheney  
Totally. Yeah, yeah, that's a painful type of educational opportunity. But yeah, really important. And these people will go on and live their lives and that could be really impactful for them to be like, I can't be mean to people or treat them this way. It's not okay. 

Emily  
Yeah.

Madeline Cheney  
So let's just end with your your feelings about I don't know just like a sum up of what like how you feel about your, your job to educate others on Nora's behalf and to teach her how to do the same.

Emily  
I think right now I'm, well, my husband and I and my son are Nora's biggest advocates. We're going to be her voice for now until she can kind of formulate a way to have her own voice when it comes to educating others. I will always talk to her about her dwarfism. I will always be honest with her about it so that she can then go and help herself by educating others because I'm not always going to be there to be the one to step in and, and tell them she's not a baby and she can do this and she's strong and she's smart and, and all those amazing things that she is. I want her to be able to do that for herself. Eventually, especially entering school would be a good opportunity for her to be able to tell kids, she's not a baby. She can do whatever they can do and she's not as different as she seems. And so I think it's still my job right now. But it's not always gonna be I mean, I will always advocate for her and I will always educate others on her behalf. But I want her to be able to learn from us to do it on her own, so that she can feel confident about advocating for herself down the road.

Madeline Cheney  
Well, thank you so much, Emily, for sharing your wisdom about educating others about your children's differences. 

Emily  
Thank you.