Speaker 1 (00:00)
you

you

Hi my name is Hannah Ponsford and welcome to my podcast, Our Kind of Normal. I'm the oldest daughter in a family of three girls and my youngest sister Ella was born with special needs. Being the sibling of a person with disabilities is such a unique experience and a lot of the time it can feel really isolating. When I was growing up, I still feel this way sometimes now, I was always wanting to talk to people who could relate to the level of responsibility that I feel for my sister.

I realized that a big part of what made it feel isolating was that so many people were afraid to ask questions. Asking someone about an experience you can't relate to can be scary, because people usually don't want to say the wrong thing, and I think this has become a big barrier in the disabled community. My goal is to make this a place where we ask questions and really get to learn about each other. I want to make room for open conversations where people with disabilities and their siblings can talk about their experiences and really be heard.

I can't wait to share me and Ella's story with you, and I'm so excited to learn all of your stories as well. For the first episode, I thought it was only appropriate that I introduce you to my sister, Ella. Ella is my built-in best friend. She's also the biggest social butterfly, a sass master, and the life of any party. Today, we're going to talk about all things sisters and what it's like growing up together. Thanks for listening. How's your day going? Pretty good.

Speaker 2 (01:35)
Good.

Do you want to see me sketch?

Speaker 1 (01:39)
See you sketch. Maybe later. Should we a sketching? Do a sketching FaceTime date later? That'd be kind of fun. I think that's a good idea. Yeah, maybe we'll save the sketching for after. Maybe we can upload pictures of what you sketched to show everybody.

That'd be pretty cool. What'd you do this morning?

Speaker 2 (02:04)
I ate breakfast, so good.

Speaker 1 (02:06)
⁓

What'd make?

Speaker 2 (02:09)
My most favorite favorite favorite spoon is guess

Speaker 1 (02:16)
Yes? okay. Dang, that's exactly what I was gonna say. I was literally gonna say banana and peanut butter.

Speaker 2 (02:25)
Yeah, and sometimes I don't like a bunch of ice in it.

Speaker 1 (02:31)
I don't like an icy smoothie either. I like like a thick creamy smoothie. Did you make it yourself?

Speaker 2 (02:37)
It's too loud.

Speaker 1 (02:38)
Yeah, it is really loud. Yeah, pretty much. Loud like you, huh? Whoa. All right, can we do an intro? you?

Speaker 2 (02:51)
You can go first, then me.

Speaker 1 (02:55)
Got it, okay. Hey guys.

Speaker 2 (02:56)
Let's do so you can do it.

Speaker 1 (02:58)
Okay, sounds good. We'll go in like first order. Okay, So I'll go and then you go. Okay, deal. I'm Hannah and this is my sister, Ella.

Speaker 2 (03:08)
My name is Ella, so my birthday is coming up. I'm going to be 21 this year. And I have a have a Stitch birthday party.

Speaker 1 (03:22)
Stitch, birthday, yeah. ⁓

Speaker 2 (03:24)
Uh,

it's Chinese food

Speaker 1 (03:28)
are we doing Chinese food? Yeah. That sounds so good. That'll be so much fun. Do you have a favorite type of Chinese food?

Speaker 2 (03:34)
Ugh, my favorite is Yenkeng It's in Wonderland!

Speaker 1 (03:38)
What is that?

is that the restaurant? okay, cool.

Speaker 2 (03:45)
My favorite dish is cashew chicken with cashews in it and fried rice.

Speaker 1 (03:52)
Yum. love cashew chicken. That's probably one of my favorites too. I also love Mongolian beef. So good. Yeah, you've been excited about your 21st birthday, huh? This has been coming up for a while.

Speaker 2 (04:01)
Mmm.

a paper chain.

Speaker 1 (04:11)
Ooh, that's a good idea, like a countdown paper change. That would be so much fun. And I'm so excited I get to come home and see you. When? I'm coming home on the 25th. When is 25th? 25th is at the end of the month. So like a little under a month.

Speaker 2 (04:27)
my goodness, it's coming right up!

Speaker 1 (04:30)
I know, it's pretty soon. What are we gonna do together? Oh, sorry.

Speaker 2 (04:34)
Okay, my favorite thing to do is ⁓ hanging out with you on my birthday. actually makes me happy.

Speaker 1 (04:42)
⁓ Makes me really happy too. I'm so glad we get to hang out.

Speaker 2 (04:45)
And my favorite boba smoothie is mango fun time with extra boba. It's like three boba.

Speaker 1 (04:53)
Mango

fun time is that what it's called? Yes. Dang. I feel like we should get matching. Yeah. Yes. That's our favorite thing to do when we're together, huh? Yeah. Get both of them together.

Speaker 2 (04:56)
I'll have to try it.

T-shirts

Speaker 1 (05:12)
Well that'd be cute. What kind of t-shirt?

Speaker 2 (05:14)
⁓

Speaker 1 (05:17)
It's gotta be one I wanna wear too. Okay. ⁓

Speaker 2 (05:21)
Sisters are the best friends ever. We make it sparkle and shine like sisters.

Speaker 1 (05:31)
I love that. I feel like we could custom make that. Maybe we could put like a picture of our faces on it or something. How about my t-shirt will have your face and your t-shirt can have my face.

Speaker 2 (05:46)
my god. If I go like this, I'll like this.

Speaker 1 (05:52)
Yeah, I kinda, I think it'd be funny if I had a picture of like, a human picture of-

Speaker 2 (05:56)
If I open up my closet, say, okay, here comes my birthday shirt. So, it's not really like this.

Speaker 1 (06:08)
Just staring you down.

Speaker 2 (06:10)
Yeah, and my favorite thing that is exciting about is my horse turner Stacey's coming to my house.

Speaker 1 (06:19)
Oh, that's gonna be so fun. Yeah, can we talk about horse lessons and all that? Yeah. Duh. Tell me about it. How's it been? Can you explain a little bit about what Full Stride is and what you

Speaker 2 (06:35)
So, ⁓ Stacey gave me horse taxes at horse drive because disabilities can go do it too. are different disabilities and everything. And, ⁓ like they, they can do it like wherever they can, like on the horse tech. Excuse me, how to go around the cones and trot and everything. And, poles too. I'm going to be in the horse show this September.

Speaker 1 (07:06)
No way, really? my gosh, that is so exciting! A meet and greet? How does that work? I should. OK, I'm going to try to do that. That sounds so cool. How does the meet and greet work?

Speaker 2 (07:10)
Wait.

You should get off work and come.

We have free food and free drinks.

Speaker 1 (07:25)
Awesome. Okay, sweet. I want to try to come. Yeah, so that's, it's so cool how you explained it. So kids with disabilities can...

Speaker 2 (07:33)
guess what my favorite part is washing horses

Speaker 1 (07:37)
⁓ that sounds really fun.

Speaker 2 (07:39)
Like sometimes you have to watch a horse not ride because the horse is not cannot stand the heat

Speaker 1 (07:47)
Yeah, you gotta keep them cool, huh? Kinda spray him down. Yeah, I love how you explained full stride.

Speaker 2 (07:54)
and peanut decided to fart in my face.

Speaker 1 (07:58)
my god. ⁓

Speaker 2 (08:02)
But no sir, I guess what I did, I stand back and said, oh yeah.

Speaker 1 (08:09)
Yeah, absolutely not.

Speaker 2 (08:10)
I was walking away and Stacey saw my face.

Speaker 1 (08:13)
She saw your face after the horse farted in it? but I don't know about that.

Speaker 2 (08:21)
She cracked me up. She saw me like laughing. She laughed so hard.

Speaker 1 (08:32)
my gosh, that's great. You've learned a lot of full stride, huh? What have you been working on lately? What have been some of the horseback riding skills? Put your hands down, like how to hold the reins. Okay, cool. Have you been trotting more? You were learning how to trot earlier. Kind taking a break from it. Yeah, so you mentioned the poles. So do you weave through the poles on the horse? That's so cool.

Speaker 2 (08:57)
like ⁓

Speaker 1 (08:59)
That awesome. That

was so cool. So I wanted to talk a little bit about what it's like being sisters. yeah, we can talk about that. So you want to explain a bit about your disability.

Speaker 2 (09:13)
I have a disability of corpus callosum and I can't not like function right with other people.

Speaker 1 (09:22)
So you have a condition where it's... You all right?

Speaker 2 (09:30)
I forgot to brush my teeth.

Speaker 1 (09:33)
It's okay. You know what? That's the beauty of a podcast. No one has to know. It's all good. I wouldn't even know it if you didn't tell me.

Speaker 2 (09:41)
I'm just gonna brush my teeth after this.

Speaker 1 (09:44)
Yeah, that's okay. You can do it after. It's all good. But yeah, so you were born with hypomyelination of the corpus callosum. So around the core of your brain, there's a layer of myelin tissue that's in charge of cognitive processing and motor skills. So yours is hypo developed. it's not that you can't do it right. It's just that it takes some extra time. So motor skills, cognitive processing are a bit more challenging and take

Just some extra practice and extra time. Is it hard that you can see your friends do things you can't? Yes. Yeah. But you know what? That's actually not true that you can't ride a horse because you were just telling me about riding a horse and weaving through poles and learning how to trot. I don't know how to do any of that.

Speaker 2 (10:15)
You are the force.

You should try. You should come sometime during the whole session with me put a helmet on you and I can throw you on the horse and teach you how to trot.

Speaker 1 (10:33)
But I understand.

we should totally do that. That would be so fun. You'd probably be speeding way ahead of me. What's your favorite thing about having a sister?

Speaker 2 (10:51)
Hang out with them.

Speaker 1 (10:53)
Yeah, me too. It's kind of like having a built-in best friend, huh? Yeah.

Speaker 2 (10:59)
Hey, yeah, hey, do not forget about Summer

Speaker 1 (11:03)
Of course. Yeah. So I'm the oldest Summer is the second oldest. I'm 28 summers 26 and you are the youngest and you're about to be how old

Speaker 2 (11:13)
21

Speaker 1 (11:15)
21,

20 fun.

Speaker 2 (11:18)
Guess what?

I am gonna kick my ass at my birthday party dancing.

Speaker 1 (11:28)
Explain that. You're gonna dance? Oh yeah, I'm gonna dance with you. It's gonna be so much fun. What is your favorite thing to do with your sisters?

Speaker 2 (11:29)
I'm gonna dance.

My favorite thing to do is just hang out with them and go to do stuff. Not the beach

Speaker 1 (11:45)
Not the beach, you're not going to anything but the beach. Yeah, we get to do a lot of stuff together though, huh? It's pretty fun being able to hang out. What are some of the things we go do when we do hang out?

Speaker 2 (11:59)
Boba, coffee.

coffee.

Speaker 1 (12:06)
Coffee, yeah we do go to coffee a lot. We'll go to the movies, we'll go to the lake.

What is something that your sisters do that annoys you?

Speaker 2 (12:16)
⁓ call me a brat.

Speaker 1 (12:22)
Yeah, how often do we do that?

Speaker 2 (12:25)
Every time I do that.

Speaker 1 (12:27)
When you're a brat?

Speaker 2 (12:28)
Put your pants on.

Speaker 1 (12:33)
Okay,

okay. So should I explain the camouflage pants? Ella used to have a pair of camouflage pants that she would wear all the time. And every time she would come out of her room at night, I'd be like, Ella, you can't go out without pants on. And she'd be like, I have pants on. And I'd be like, where are they? And they were her camouflage pants. And I'd do it every time. And you would get really annoyed, huh? Yes.

Speaker 2 (12:55)
I ⁓

Speaker 1 (12:59)
Is that what I sound like to you sometimes? Yeah, you know, that's fair. That's fair. I'll take it. What is something that you want us to be able to do more of together?

Speaker 2 (13:01)
Yeah.

To fly alone together somewhere.

Speaker 1 (13:16)
That's a good one. Yeah. Can you talk flying alone together? Can you explain a little more about that?

Speaker 2 (13:22)
I want to go to like Bahamas.

Speaker 1 (13:25)
Ooh, that would be really fun. Yeah, we're trying to get to a point that we can do a sister trip where you fly on your own and come meet me in summer somewhere. Because you live up in Santa Rosa and I live in Santa Barbara and Summer lives in San Diego. So we've got to get creative sometimes with how we spend time together. So I think that's a really good goal for this year. Try to get to a point that we can take a trip together, right? Mm-hmm. Yeah.

What do you think makes it tricky to fly alone? What makes you feel?

Speaker 2 (13:59)
Watch your mask and carry.

Speaker 1 (14:02)
the oxygen masks when they do the safety breakdown. Yeah, I feel like you've gotten really good at it though, because you and I flew together earlier this year to go to your church competition. You did awesome. You did so good.

What is it like having sisters that live far away?

Speaker 2 (14:25)
You don't have to annoy me as much

Speaker 1 (14:29)
I don't have to annoy you as much. All right, yeah, that's fair. Maybe we get like breaks from each other and then we get to really be intentional with the time we spend together.

Yeah. Yeah. I, I always miss you. always wish we could live closer, but it is cool that we still get to spend a lot of time together considering we spend a lot of time on FaceTime and we still visit each other quite a bit. Do you ever wish that we lived closer? Yeah, me too.

So, I have a question. What do you tell yourself when you're doing something challenging?

Speaker 2 (15:11)
I got this.

Speaker 1 (15:12)
You got this. That's a good one. What do you think helps get you through a hard day?

Speaker 2 (15:20)
See my ILS worker

Speaker 1 (15:23)
senior your ILS worker. Can you explain what she helps you with?

Speaker 2 (15:27)
She always makes me smile.

Speaker 1 (15:30)
She makes you smile. Yeah, she is pretty great. She helps you with life skills, right?

Speaker 2 (15:36)
And a dentist.

Speaker 1 (15:38)
Yeah, like going to the dentist and just learning how to do things independently. How does it feel when me and Summer try to step in and help you when you're doing something that's challenging? You don't like it? Yeah. Do you want us to let you take the time to be more independent sometimes?

Speaker 2 (15:48)
I don't like it.

I am almost 21. I don't need help.

Speaker 1 (15:58)
Yeah, I think sometimes me and summer were so used to you being our baby sister, right? So we want to like help you out, but sometimes you've got to learn how to back off a little bit.

Speaker 2 (16:10)
Yeah.

Speaker 1 (16:11)
Yeah.

Speaker 2 (16:13)
Can you please just back off ⁓ on my birthday please.

Speaker 1 (16:18)
Okay. Are you worried that me and Summer are going to be trying to help you out too much on your birthday? Yeah. Yeah. Okay. Well, that's good to know. I feel like it's good for us to tell each other that so then we can know to just take a step back. Let's do your thing.

Speaker 2 (16:33)
Mm-hmm.

Speaker 1 (16:35)
I have so many reasons to be proud of you. I would like to hear what makes you proud of yourself.

Speaker 2 (16:42)
I can handle fire drills.

Speaker 1 (16:45)
You can handle fire drills. That's a good one. You've worked really hard to be able to do that, huh? What is it about fire drills that intimidate you?

Speaker 2 (16:53)
the sound.

Speaker 1 (16:54)
Yeah. Can I tell them about your super hearing? So Ella's ears, I guess in our ears, there's a valve that closes when you hear loud noises and Ella's just stays open all the time. So really loud noises like fire drills and blenders and things like that. Fire trucks, yeah. Everything. Yeah. What does it feel like when you hear a fire alarm?

Speaker 2 (16:58)
*Screams* Yeah

Speaker 1 (17:22)
Yeah, I imagine that's not fun. What do you tell yourself when a fire drill happens and you're not expecting it?

Speaker 2 (17:31)
Good luck. Walk to the place.

Speaker 1 (17:36)
Yeah, just follow the routine you were taught.

Do you think having a routine is helpful? of helps you know what to do in a moment. Okay. What would be your biggest dream come true?

Speaker 2 (17:52)
Come and see you every day.

Speaker 1 (17:56)
I would love that. That would be my biggest dream too. I think we need to find ways to spend more time together,

Speaker 2 (18:05)
Yeah, this time we go to lunch and get...

Speaker 1 (18:09)
Yeah, can go get a pokey for sure. Pocky and boba. That'd be really fun. I would love that. Let's do it. You should come hang out with me in Santa Barbara. We can get pokey and boba here too. And do a whole Santa Barbara trip. Ooh, yeah. Might be fun. Pokey What would be like the absolute dream vacation you'd want to go on together?

Speaker 2 (18:30)
Must go.

Speaker 1 (18:31)
Ooh, okay. You're gonna make that happen. That'd be really fun. Get some tacos, hang on the beach.

Anything else you want to share with the listeners?

Speaker 2 (18:42)
My favorite princess is Rapunzel.

Speaker 1 (18:47)
Ooh, I love Rapunzel. What makes her your favorite princess?

Speaker 2 (18:50)
Because she's brave.

Speaker 1 (18:53)
She is really brave. She actually reminds me a lot of you. You're really brave. You remind me a lot of Rapunzel because you are so funny and spunky and creative and adventurous. Spunky is like, how do you explain spunky? Like you got a little ⁓ flavor, you know? But you're adventurous and brave, just like Rapunzel. And you have beautiful blonde hair.

Speaker 2 (19:22)
Mm-hmm.

Speaker 1 (19:23)
All right, well, thanks for chatting with me. I'll talk to you soon.

Speaker 2 (19:27)
I want to talk to you on here still.

Speaker 1 (19:31)
You want to just hang and keep talking?

Speaker 2 (19:33)
That's

Speaker 1 (19:35)
Okay, sounds good. I'm gonna hang it up and then we can chat after, Mwah.