Sibling Takeover: Tenley on Growing Up with Addie

In this first Sibling Takeover episode, host Christian Dias hands the microphone to Tenley, age eleven, whose older sister Addie has MED13L syndrome. Christian's own sister, Elle, has MED13L too.

The Sibling Takeover series gives the brothers and sisters of people with MED13L a chance to share the journey in their own words. Christian and Tenley trade stories about growing up alongside a sibling with MED13L. They talk about the games they play together, like backyard volleyball and Uno, and about Addie's big personality. Tenley describes the patience it takes when a sister communicates more slowly. She shares what she has taught Addie, and what Addie has taught her in return: to listen more closely, to be less quick to judge, and to feel more like herself.

The two also talk about what they wish other kids their age understood about siblings like Addie and Elle.

The Voices of MED13L is a podcast from the MED13L Foundation. To learn more about MED13L syndrome and the Foundation's work, visit med13l.org.

Transcript

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Sibling Takeover - Tenley (Addie's Sister)

Christian: [00:00:00] My name is Christian Dias. I'm the proud older brother of Elle, who is nine years old and was diagnosed with MED13L syndrome when she was just over a year old. Welcome to The Voices of MED13L, a podcast from the MED13L Foundation.

For this episode, we're doing something a little different. This will be the first of hopefully many episodes of our sibling takeovers, where siblings of individuals with MED13L get to take over the microphone and share what this journey looks like from our perspective.

Much of the work the MED13L Foundation understandably centers around individuals living with MED13L syndrome, from advancing research and developing resources to supporting the parents and caregivers raising and advocating for their loved ones. But a MED13L diagnosis affects the entire family, and siblings have a unique place in that story too. We grow up alongside our siblings. We're their playmates, 

friends, protectors, cheerleaders, 

and sometimes their teachers. As we get older, many of us also begin to understand more [00:01:00] about the role our parents play and find our own ways to support both our sibling and our family.

But what I think is equally important is recognizing how much our siblings teach us in return. 

The sibling takeover is a chance to shine a spotlight on that relationship and hear directly from the brothers and sisters who are growing, learning, and experiencing life alongside someone with MED13L.

Christian: Today, I'm excited to talk with a fellow MED13L sibling, Tenley, whose older sister, Addie, has MED13L syndrome. 

Christian: Hi, Tenley. Thank you so much for joining me today. Before we talk about Addie, I thought we should let everyone get to know you a little bit 

first

How old are you 

Tenley: I'm 11. 

Christian: And what grade are you in? 

Tenley: Sixth. 

Christian: What's your favorite color? 

Tenley: Mm, probably like a butter yellow. 

Christian: Yeah I like green. Like a dark [00:02:00] green. Do you have a favorite TV show or like a movie right now? 

Tenley: Right now I've, been watching more Modern Family. 

Christian: I've watched a couple of those episodes with my friends. Do you like about it? 

Tenley: It's funny and kind of relatable-ish. 

Christian: Yeah , do you have a favorite character?

Tenley: Probably Hailey, I think.

Christian: Is that the older sister? Yeah. The oldest one? Yeah. What are some of your favorite things to do? Are there any sports, activities, hobbies that you really enjoy? 

Tenley: I just started volleyball. 

Christian: Oh, that's fun. Yeah. I really enjoy playing the drums. I don't really watch shows or movies that much, but I do like to play video games. So I like to play mostly, car [00:03:00] games or... You ever heard of Red Dead Redemption 2? 

Tenley: No. 

Christian: No. It, it's a, it's a fun game. 

Elle calls it cowboy game. She's always asking me, "Can I play cowboy game?" 'Cause she likes to watch the horses. what is something about Addie that you think is really special? 

Tenley: She has, like, a really big personality, and she, like, really expresses it, so.

I like that.

Christian: I think what I really like about Elle is how much she likes cars with me. like the other day we were on a walk, and she just asked out of nowhere, "What's your favorite car?" My dad and I, we both are really into cars, and it's really nice for her to connect with us on that, 'cause it's really adorable. she'll say, a bunch of numbers and letters, 'cause if you look at a car, the name of a car, it's basically, it's just a bunch of numbers and letters, right? One time she goes like, "GTH," and that's like an actual car, and she didn't even know it, so I think that's really hilarious.[00:04:00] 

As siblings, we sometimes help our brother or sister learn things without even realizing we're doing it. Is there something that you've helped Addie learn how to do?

Tenley: I think I've helped her she likes when I play volleyball outside, like usually I'll like toss it up and she'll try to hit it. 

Christian: Yeah. 

Tenley: And she likes doing that. And she likes being like the boss of things, and knowing that she can do what she want to do, and I let her, and she likes to do that a lot and I kind of just go with it.

Yeah. But she likes, playing that. And I taught her how to play other games, some card games. Like she really likes Uno. A while ago I taught her that, and she really likes it. 

Christian: That's nice. Yeah. I am trying to teach Elle how to play drums , 'Cause like I said before, she really likes playing drums with me, so I wanna teach her so she can play along to her favorite songs.

And then my brother and I, [00:05:00] like we said before, taught her MMA moves. So she's getting pretty good at them. Now I want to turn that same question around. Sometimes our siblings teach us things without even knowing they're teaching us. What do you think Addie has taught you? 

Tenley: A lot about wrestling. 

Christian: Yeah. 

Tenley: She, really likes wrestling, and she, always has it on her TV a lot. So, sometimes I'll just walk in her room and then get caught up in it, so I just watch it with her.

Christian: Yeah. Elle has definitely taught me how to be more patient. Even though it's sometimes very hard to be patient you have to be patient because they learn at a different speed than you.

Tenley: Yeah, patience, and

How to listen better with people. 'Cause- she's taught me to listen more because, it's a lot slower for her to communicate, and [00:06:00] she's kinda, , taught me to listen more. 

Christian: Yeah, I think another thing that Elle has definitely taught me is to persevere 'cause she works so hard to learn things that would come much more naturally to a typical kid, and I see her progress every day, and it's, it's really inspiring for me. 

Do you think having Addie as your sister has changed the way you think about people who may learn, communicate, and experience the world differently?

Tenley: Definitely yes because it's obviously it's like a lot different with if I were to have a sibling that could communicate more, and she can't as much and with other people, sometimes other people would like judge people for not being able to do things like either academically or physically.

Christian: Yeah. 

Tenley: And Addie's definitely taught me not to be so judgmental- 

Christian: Yeah ... 

Tenley: with that. [00:07:00] 

Christian: Yeah, same with me. What would you want other kids your age to know about kids like Addie? 

Tenley: To try and be more patient and listen more because they do have stuff to say, but sometimes it's a lot harder for them to communicate with that.

So just like try to be a little more patient and listen. 

Christian: Yeah. I agree. And then also sometimes kids my age, haven't been exposed to people with special needs, so they don't know how to talk to them , and I think they just need to realize that , they're just people.

I don't know why it's hard for people to understand that , but it is. All right. I have one last question for you. If you could tell Addie one thing you love about being her sister, what would you tell her? 

Tenley: That she has taught me a lot about special needs and that also it's just like, [00:08:00] it's fun too to be her sister because she's very proud to say what she has to say a lot, and it's it's fun.

Like sometimes she'll just randomly say something out of the blue and it's really funny. And she's kind of taught me to like be myself more. 

Because she definitely just likes to express herself. 

Christian: Yeah, I think the, the same thing with Elle. She definitely needs to keep teaching me how to be more outgoing.

All right. Thank you so much for talking with me today and sharing a little bit about you and Addie. It's really nice to connect with another MED13L sibling, and I think it's important for our families and our community to hear what this experience looks like from a sibling's perspective. There's a lot that siblings do quietly. We learn alongside our brothers and sisters. We support them. We celebrate their progress. And as we get older, we often begin to understand our families and the MED13L journey in a different [00:09:00] way. But our siblings are also shaping who we become. Thank you, Tenley, for sharing your perspective and helping us give siblings a voice in this conversation.

And thank you to everyone listening to this episode of Voices of MED13L. To learn more about MED13L syndrome and the work of the MED13L Foundation, visit med13l.org.

Thanks for listening, and we'll see you next time on The Voices of MED13L.