Growing Up Together: Siblings, Support, and the Power of Inclusion

In this heartwarming episode, CEO Bruce Drake sits down with 10-year-old Jace Downing, one of ARISE–EFR’s youngest participants, volunteers, and natural advocates. Joined by Jen Barkley, Community Inclusion Supervisor, this conversation shines a light on the experiences of siblings of children with disabilities and the supportive programs that help them thrive.

Jace shares his love of farming, volunteering at ARISE at the Farm, helping fellow riders gain confidence, and participating in Sib Shops and Horsemanship Camp. Jen offers insights into Sib Shops, inclusive recreation programs, summer rec, and the unique ways ARISE–EFR supports siblings—giving them space to connect, learn, and simply be kids.

Filled with laughter, honesty, and the genuine perspective only a sibling can offer, this episode highlights the strength, compassion, and resilience that grow within families—and the vital role of inclusive programs that support them.

Transcript

SPEAKER_02 0:08

This is the Arise Exceptional Family Resources Podcast with your host, CEO Bruce Drake.

SPEAKER_03 0:15

Hi everyone, I'm Bruce Drake, the CEO at Arise and Exceptional Family Resources, and I'm your host for today's Exceptional Talk on Disabilities. We have a good one for you today. I'm pretty excited about this. We have Jace Downing, who is somebody who is an advocate and who is a volunteer at a lot of our programs, also participates in a lot of our programs. And you're not going to be able to tell this by just looking or just listening. But Jace is also 10 years old, so we're thrilled to have him, our youngest guest we've ever had. So very excited. And we also have Horizon EFR's community inclusion supervisor, Jen Barkley. So Jen, welcome.

Jace’s Interests And School Life

SPEAKER_00 0:49

Thank you.

SPEAKER_03 0:50

Excellent. So, Jace, let's start with you, right? Let's get you warmed up a little bit. Why don't you tell us a little bit about yourself? What's what are some of the things you like to do?

SPEAKER_01 0:59

Um when I get older, I want to be a farmer. I like tractors.

SPEAKER_03 1:04

Um what kind what kind of farmer do you want to be?

SPEAKER_01 1:07

Just like every I want to do like crops and like animals. Crops and animals. I love animals.

SPEAKER_03 1:14

Okay. Are you in like a 4-H program or something like that?

SPEAKER_01 1:18

No, I do want to go.

SPEAKER_03 1:19

You do want to do that? Okay. And what are your favorite subjects at school?

SPEAKER_01 1:24

Um math. Um that's really my favorite one.

SPEAKER_03 1:29

And you were you were talking today before we got started about uh a job that you have at school that you do every morning that you're missing today. What job is that?

SPEAKER_01 1:37

I do the morning announcements at my school.

SPEAKER_03 1:40

That is fantastic. So you're a natural. You're this isn't your first time in front of a microphone.

SPEAKER_01 1:44

No, I've also been in the news a couple times.

SPEAKER_03 1:47

You've been in the news a couple times. For what?

SPEAKER_01 1:49

Uh the one from like the Manila Library and one at a baseball game. I forgot the uh I had two others I forgot, I think.

SPEAKER_03 1:58

Why were you in the news? Why you?

SPEAKER_01 2:00

I don't I mean, at the baseball game they just saw us walking by.

SPEAKER_03 2:04

Okay.

SPEAKER_01 2:04

Um and then at the library, my grandma's like a good member at the library. And they yeah, they asked me.

SPEAKER_03 2:11

So you so you're used to being in the in the spotlight. You're a star. Star in the making.

SPEAKER_00 2:16

He has the the personality that people just love to be around him.

SPEAKER_03 2:20

That's great. That's great. And I'm sure that's gonna all shine through as we talk about everything that's going on. So before we get too far into this, Jen, why don't you tell everybody about yourself?

SPEAKER_00 2:30

So I have worked with Arise EFR for four years. I started uh as an in-home supervisor. So I knew Jace's brother, Jax, before I knew Jace. Then I started the Sib Shops. I became a facilitator for that.

SPEAKER_03 2:49

So what's Sib Shops?

SPEAKER_00 2:50

Sib Shops is a program for the siblings of a person with a disability. So we'll meet once a month, and Jace has been part of that as long as I have. Um we meet once a month and we just do some fun stuff. We talk about um it's just a time for focus to be on the sibling because the siblings that have the disability need more of mom and dad's time. So that two hours, I am just all in. We do fun stuff, we do crafts, we go on field trips. Um, what are some of your favorite things that we've done so far, Jay?

SPEAKER_01 3:25

I just like like ta like meeting all the people, and it's fun to like do all this fun stuff and like field trips that we do.

SPEAKER_03 3:33

And um What other field trips have you been on?

SPEAKER_00 3:36

Uh do you want to tell them where we've been?

SPEAKER_01 3:38

Uh we've been to like this place that's Lake Sky Zone. I forgot the name of the.

SPEAKER_00 3:42

Oh yeah, we went to some bound house. Can't remember.

SPEAKER_01 3:46

Yeah. Um and then we also went to a rise. I like it.

SPEAKER_00 3:49

Yeah, we had a rise. We had a day at the farm. We've gone to Apex. Apex was really cool.

SPEAKER_03 3:58

Did you go into bumper cars at Apex?

SPEAKER_00 4:00

We didn't do bumper cars maybe next time. We did um bowling and video games. Yes.

SPEAKER_03 4:06

So this is a program that's just purely for the siblings or purely for the siblings.

SPEAKER_00 4:11

Mom and dad drop off kids to me. We have pretty five or six active kids. Um, and we just play games, we do crafts, we talk. Favorite snack, I provide snacks are Oreos.

SPEAKER_03 4:27

Oh, those are my favorite too. In case anybody out there is wondering, I could be bought with Oreos.

SPEAKER_00 4:32

Yeah, Oreos are a big, a big favorite.

SPEAKER_03 4:36

Is there a cost to the families for the program?

Visits To Arise At The Farm

SPEAKER_00 4:38

No. The it's FSS funded.

SPEAKER_03 4:41

Okay. So family support services funded.

SPEAKER_00 4:44

Yep.

SPEAKER_03 4:44

Okay.

SPEAKER_00 4:45

And if child with a disability is a part of a different grant, we ask for a$5 donation, but I have not yet found where we can't figure out how to get the person in there. That's great.

SPEAKER_03 4:59

All right. So you and in talking about that program, you said one of your favorite places to visit was arise at the farm, right? Which is a farm in Chitnango, New York, which is 78 acres. It has 77. Oh, 77 acres, thank you. And it has, I think, 18 horses.

SPEAKER_00 5:20

Around there.

SPEAKER_03 5:20

A donkey.

SPEAKER_00 5:21

A donkey.

SPEAKER_03 5:22

And some chickens.

SPEAKER_00 5:24

Chickens, a rabbit, and a tortoise.

SPEAKER_03 5:26

Oh, I did see the rabbit the other day. I was out there last week for volunteering.

SPEAKER_00 5:30

And lots of cats.

SPEAKER_03 5:31

And an occasional dog, depending on who's there for the day. So what do you like about visiting the farm?

SPEAKER_01 5:39

I just like how I said, I like animals and I like horses.

SPEAKER_03 5:44

So what do you do when you're out there?

SPEAKER_01 5:46

I usually like clean stalls and help with lessons.

SPEAKER_03 5:49

So you volunteer to clean horse stalls?

SPEAKER_01 5:52

Yeah.

SPEAKER_03 5:52

Okay. Let me ask, do you clean your room at home?

SPEAKER_01 5:56

Sometimes. Sometimes.

SPEAKER_03 5:57

But you'll volunteer to clean clean a horse stall?

SPEAKER_01 6:00

Yeah.

SPEAKER_03 6:00

That's fantastic. What else do you do there?

SPEAKER_01 6:03

I also just like help with like lessons sometimes.

SPEAKER_03 6:07

All right, so what do you do to help with the lesson?

SPEAKER_01 6:09

I just stand on the side of my mom and like help somehow.

SPEAKER_03 6:13

Okay.

SPEAKER_00 6:14

He is a great motivational speaker. So like if someone when we were there for sib shops, we had a friend that was terrified to get on the horse. And he talked her down from the ledge that she was on, and she wound up getting on the horse, and she was so excited that he was that kind of friend to her to talk her and make her comfortable with getting on the horse. Because she would have been so sad if she missed it.

SPEAKER_03 6:48

So you feel pretty proud about that?

SPEAKER_01 6:50

Yeah, I like I like helping.

SPEAKER_03 6:53

Have you always liked helping?

SPEAKER_01 6:55

Yeah, I help my dad in construction too.

SPEAKER_03 6:57

Oh so you do construction? So it sounds like we're gonna sign you up to help us with our ramp program.

SPEAKER_00 7:02

Oh, I'm I'm guaranteed he'll be at the farm ramp build.

Helping Others Gain Confidence

SPEAKER_03 7:06

So for people who don't know, we ha we uh have a a RISE ramp program, and one of the places that we're gonna be building a ramp next is out at the farm so that people can uh more easily get up on the horses so for their lessons. So what else do you do at the farm?

SPEAKER_01 7:24

I just I like like ta like petting like the cats and like do like just spending time with the animals. Like like brushing the horses and stuff.

SPEAKER_03 7:34

Like brushing the horses. Aren't you scared? I mean those horses are pretty big.

SPEAKER_01 7:37

No.

SPEAKER_03 7:38

No?

SPEAKER_01 7:38

I mean, once they stepped on my foot, how did that hurt? It just hurts a little bit.

SPEAKER_03 7:43

Does your foot still work?

SPEAKER_01 7:44

Yeah.

SPEAKER_03 7:45

So I'm I'm from Queens, New York. I'm from New York City. I'm a little intimidated by the horses. You're not scared of the horses at all?

SPEAKER_01 7:50

No.

SPEAKER_03 7:51

Okay. You're a pretty brave man. Pretty brave man. So uh my understanding is that you're also involved with the summer rec program, is that right?

SPEAKER_00 8:00

He attends summer rec and last summer he was part of the horsemanship camp.

SPEAKER_03 8:06

So he got uh So why don't you just explain what both the summer summer rec program and the horsemanship camp programs are?

SPEAKER_00 8:13

Aaron Ross Powell So we are fully inclusive, and our summer rec program is basically like a summer camp, but we don't have the camp word. So that's why we call summer rec.

SPEAKER_03 8:26

Okay.

SPEAKER_00 8:26

Um summer recreation, you have to be at least finished with first grade because it's a long day. We meet at 9 o'clock to 3 o'clock, and it's all day fun.

SPEAKER_03 8:40

Monday through Friday?

SPEAKER_00 8:41

Monday through Friday. Uh eight weeks in the summertime.

SPEAKER_03 8:47

And about how many kids would you have out at the the rec program on a given day?

SPEAKER_00 8:52

I think around 20.

Summer Rec Overview

SPEAKER_03 8:54

Okay.

SPEAKER_00 8:55

In our we have summer counselors who are mostly college kids, so they're full of energy to match the energy of our children that we are working with all day. But some of our activities are fishing. Yeah. We've done Jace, do you fish?

SPEAKER_01 9:15

Yeah. There's n you know like this year we didn't really catch a lot of things.

SPEAKER_00 9:20

Yeah, the pond was kind of I think it was a dry year, so the the fish weren't biting.

SPEAKER_01 9:24

Yeah, last year I think we c somebody caught caught a sta snapping turtle.

SPEAKER_03 9:28

Really? Yeah. Oh, that must have been exciting.

SPEAKER_01 9:31

Yeah.

SPEAKER_00 9:32

And terrifying.

SPEAKER_01 9:35

They always had to cut the line.

SPEAKER_03 9:36

They had to cut the line, is that what they did? Yeah. How do you catch a snap? I didn't realize that snapping turtles would they just take what's on the hook. Okay. All right.

SPEAKER_00 9:46

But the star of our show for Summer Wreck would have to be our inclusive playground and our adaptive bikes. Those are probably the most popular. But there's always crafts. We do we just make sure they're busy. There's no screen time.

SPEAKER_03 10:03

Okay.

SPEAKER_00 10:03

So we we pull the plug.

SPEAKER_03 10:05

No electronics, no screen on your phone. No, no, no iPads, no movie day, nothing like that.

SPEAKER_00 10:10

Nope, nope.

SPEAKER_01 10:11

All outside, all out fun.

SPEAKER_03 10:12

Jace, how do you like the playground?

SPEAKER_01 10:15

I like it, and I also like how my brother can like use ramps and stuff.

SPEAKER_03 10:20

So you and your brother go to the rec program together?

SPEAKER_01 10:23

No. Not together? Not together, but he goes, and we also go to the playground sometimes.

SPEAKER_03 10:29

Okay. So what do you mean not together? You're there on different days?

SPEAKER_00 10:33

So there's different like camps. Yep. So Jace is able to go throughout the school year. Okay. We cannot support a person if they have to go to summer school. Okay. So his brother's time there is kind of restricted. We're hoping to change that so next year, because Jace attends during sibling week. Yeah. Because we have a week where it's just siblings come and they get a facilitated sib shop during that time. So our hope is next summer to have siblings able to attend with their sibling with a disability.

SPEAKER_03 11:13

Jace, is Jax older or younger than you?

SPEAKER_00 11:15

Younger.

SPEAKER_03 11:16

Younger than you? Do you mind if I ask how old is he?

Playgrounds, Bikes, And No Screens

SPEAKER_01 11:19

Seven seven and turning eight soon.

SPEAKER_03 11:22

How is it having a brother who might need a little bit more support than your typical kid?

SPEAKER_01 11:26

I mean, I I love him. Yeah.

SPEAKER_03 11:28

And he he's so um he uh he s sometimes can be a little annoying, but I think all little brothers and little sisters can sometimes be annoying.

SPEAKER_01 11:38

Yeah.

SPEAKER_03 11:39

Do you like being able to share things with him, like the rec program?

SPEAKER_00 11:43

Yeah.

SPEAKER_03 11:44

Excellent. And you also talked about horsemanship camp?

SPEAKER_00 11:48

Yep, so that is run the same time as Summer Rec. So we're on one side of the farm, which uh we call Doc's side of the farm. Okay. And then they are horsemanship camp is in the the barn side. So with horsemanship camp, they get a 30-minute riding lesson every day. And that's something Jace really likes is the riding lesson.

SPEAKER_03 12:09

Um talk about that. So, Jace, do you have a favorite horse?

SPEAKER_01 12:14

Um when I did the riding camp, like no, the horsemanship camp, I rode Shine as one of the horses there. Um I liked that horse, yeah. And then we also I think at the before the camp ends, we do this like talent show on the horses.

SPEAKER_00 12:33

Yeah, they have a horse show so parents and friends can come see what they learned for the from the week.

SPEAKER_03 12:40

Did you ever ride horses before the horsemanship camp?

SPEAKER_00 12:43

No. And he's a natural.

SPEAKER_03 12:45

You're a natural? He is a natural. Are you an athlete? Do you play sports?

SPEAKER_01 12:49

Yes, I do. I play basketball, lacrosse, and baseball.

SPEAKER_03 12:53

Well, you are absolutely an athlete, I would say that. So and how long, so was it this past year your first year riding horses, or how long Yeah. Yeah. Excellent. Excellent. Anything else about the horsemanship camp we should know?

SPEAKER_00 13:08

Um, I don't have too much to do with that. I do the paperwork for that, but Becky is.

SPEAKER_03 13:14

Is it just riding horses or is it learning to take care of them as well?

Sibling Week And Access

SPEAKER_01 13:18

It's taking care of and riding. We also do like taking care of the chickens, and we also have like tours like cleaning stalls and feeding the chickens.

SPEAKER_03 13:28

So you come to camp and you you get to interact with all sorts of different animals, right? You get to learn to ride a horse. And then we also do a little bit of hard labor where we have you cleaning stalls.

SPEAKER_00 13:40

But it's all fun.

SPEAKER_03 13:41

Yeah, no, it's it's fantastic. Sounds like you really enjoy it. Should we expect you again next year?

SPEAKER_00 13:46

Yeah.

SPEAKER_03 13:47

So, Jen, how do people find out or get more information about all of these different camps and who do they reach out to?

SPEAKER_00 13:54

Well, Mary Schwanke is going to be your initial contact. We advertise mostly, I believe, on Facebook. Word of mouth is fantastic. We go to Life Plans and we talk about offering like other the programs offered that they could attend. Um this last year, we were lucky enough to be able to offer when we go to Life Plans, Project Explore for the older kids that we support to see if they would enjoy that. And vice versa, Project Explorer was able to say, hey, maybe that's not a good fit, but Arise at the Farm could be a good fit for you. So word of mouth really is like I think the best way to connect with people. Facebook, like I said, and um the application comes out.

SPEAKER_03 14:49

Is it best thing really to just get on the Arise website? Yeah.

SPEAKER_00 14:54

We've done a lot with the podcast here.

Horsemanship Camp And Riding

SPEAKER_03 14:57

Right. Chase, let's just come back to you real quick, just because we're we're running out of time. What would you want people to know, right? So you have a younger brother who's sometimes a pain, but who you love very much, but also has some needs that are greater maybe than other seven-year-olds. What would you want people to know about how they should interact with your brother?

SPEAKER_01 15:16

Um, like he might act silly, but I mean he he's not really trying to be silly.

SPEAKER_03 15:22

Okay.

SPEAKER_01 15:22

Sometimes we he's trying to be silly sometimes, but sometimes he's not.

SPEAKER_03 15:26

You just need to get to know him a little bit to really to understand him and you know, take the time to get to know him.

SPEAKER_01 15:31

Yeah.

SPEAKER_03 15:32

Yeah, that's great. You have any questions for us, Jace? Anything else you want to say while we're on the while you're on the microphone?

SPEAKER_01 15:38

No.

SPEAKER_03 15:39

All right. So thank you, everyone. That was Jason. Uh thank you, Jason Jen, for spending some time with us this morning. Ladies and gentlemen, that was Jace Downing and Jen Barkley. Thank you all for joining us, and we hope you join us the next time as we continue to explore the vast array of services provided by Arise and Exceptional Family Resources.

SPEAKER_02 15:57

This has been the Arise Exceptional Family Resources Podcast with CEO Bruce Drake, recorded and produced at the WCNY Public Broadcasting Studios. For more information, visit our website at contactefr.org. You can also follow us on Facebook. Thank you for listening.