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

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This is the Arise Exceptional Family Resources Podcast with your host, CEO Bruce Drake.
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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.
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We have a good one for you today.
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I'm pretty excited about this.
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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.
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And you're not going to be able to tell this by just looking or just listening.
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But Jace is also 10 years old, so we're thrilled to have him, our youngest guest we've ever had.
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So very excited.
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And we also have Horizon EFR's community inclusion supervisor, Jen Barkley.
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So Jen, welcome.
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Thank you.
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Excellent.
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So, Jace, let's start with you, right?
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Let's get you warmed up a little bit.
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Why don't you tell us a little bit about yourself?
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What's what are some of the things you like to do?
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Um when I get older, I want to be a farmer.
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I like tractors.
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Um what kind what kind of farmer do you want to be?
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Just like every I want to do like crops and like animals.
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Crops and animals.
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I love animals.
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Okay.
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Are you in like a 4-H program or something like that?
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No, I do want to go.
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You do want to do that?
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Okay.
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And what are your favorite subjects at school?
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Um math.
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Um that's really my favorite one.
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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.
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What job is that?
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I do the morning announcements at my school.
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That is fantastic.
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So you're a natural.
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You're this isn't your first time in front of a microphone.
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No, I've also been in the news a couple times.
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You've been in the news a couple times.
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For what?
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Uh the one from like the Manila Library and one at a baseball game.
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I forgot the uh I had two others I forgot, I think.
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Why were you in the news?
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Why you?
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I don't I mean, at the baseball game they just saw us walking by.
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Okay.
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Um and then at the library, my grandma's like a good member at the library.
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And they yeah, they asked me.
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So you so you're used to being in the in the spotlight.
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You're a star.
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Star in the making.
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He has the the personality that people just love to be around him.
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That's great.
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That's great.
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And I'm sure that's gonna all shine through as we talk about everything that's going on.
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So before we get too far into this, Jen, why don't you tell everybody about yourself?
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So I have worked with Arise EFR for four years.
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I started uh as an in-home supervisor.
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So I knew Jace's brother, Jax, before I knew Jace.
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Then I started the Sib Shops.
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I became a facilitator for that.
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So what's Sib Shops?
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Sib Shops is a program for the siblings of a person with a disability.
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So we'll meet once a month, and Jace has been part of that as long as I have.
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Um we meet once a month and we just do some fun stuff.
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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.
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So that two hours, I am just all in.
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We do fun stuff, we do crafts, we go on field trips.
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Um, what are some of your favorite things that we've done so far, Jay?
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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.
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And um What other field trips have you been on?
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Uh do you want to tell them where we've been?
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Uh we've been to like this place that's Lake Sky Zone.
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I forgot the name of the.
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Oh yeah, we went to some bound house.
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Can't remember.
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Yeah.
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Um and then we also went to a rise.
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I like it.
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Yeah, we had a rise.
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We had a day at the farm.
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We've gone to Apex.
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Apex was really cool.
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Did you go into bumper cars at Apex?
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We didn't do bumper cars maybe next time.
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We did um bowling and video games.
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Yes.
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So this is a program that's just purely for the siblings or purely for the siblings.
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Mom and dad drop off kids to me.
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We have pretty five or six active kids.
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Um, and we just play games, we do crafts, we talk.
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Favorite snack, I provide snacks are Oreos.
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Oh, those are my favorite too.
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In case anybody out there is wondering, I could be bought with Oreos.
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Yeah, Oreos are a big, a big favorite.
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Is there a cost to the families for the program?
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No.
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The it's FSS funded.
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Okay.
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So family support services funded.
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Yep.
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Okay.
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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.
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That's great.
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All right.
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So you and in talking about that program, you said one of your favorite places to visit was arise at the farm, right?
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Which is a farm in Chitnango, New York, which is 78 acres.
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It has 77.
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Oh, 77 acres, thank you.
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And it has, I think, 18 horses.
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Around there.
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A donkey.
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A donkey.
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And some chickens.
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Chickens, a rabbit, and a tortoise.
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Oh, I did see the rabbit the other day.
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I was out there last week for volunteering.
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And lots of cats.
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And an occasional dog, depending on who's there for the day.
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So what do you like about visiting the farm?
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I just like how I said, I like animals and I like horses.
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So what do you do when you're out there?
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I usually like clean stalls and help with lessons.
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So you volunteer to clean horse stalls?
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Yeah.
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Okay.
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Let me ask, do you clean your room at home?
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Sometimes.
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Sometimes.
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But you'll volunteer to clean clean a horse stall?
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Yeah.
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That's fantastic.
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What else do you do there?
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I also just like help with like lessons sometimes.
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All right, so what do you do to help with the lesson?
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I just stand on the side of my mom and like help somehow.
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Okay.
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He is a great motivational speaker.
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So like if someone when we were there for sib shops, we had a friend that was terrified to get on the horse.
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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.
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Because she would have been so sad if she missed it.
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So you feel pretty proud about that?
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Yeah, I like I like helping.
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Have you always liked helping?
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Yeah, I help my dad in construction too.
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Oh so you do construction?
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So it sounds like we're gonna sign you up to help us with our ramp program.
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Oh, I'm I'm guaranteed he'll be at the farm ramp build.
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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.
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So what else do you do at the farm?
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I just I like like ta like petting like the cats and like do like just spending time with the animals.
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Like like brushing the horses and stuff.
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Like brushing the horses.
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Aren't you scared?
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I mean those horses are pretty big.
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No.
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No?
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I mean, once they stepped on my foot, how did that hurt?
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It just hurts a little bit.
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Does your foot still work?
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Yeah.
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So I'm I'm from Queens, New York.
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I'm from New York City.
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I'm a little intimidated by the horses.
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You're not scared of the horses at all?
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No.
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Okay.
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You're a pretty brave man.
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Pretty brave man.
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So uh my understanding is that you're also involved with the summer rec program, is that right?
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He attends summer rec and last summer he was part of the horsemanship camp.
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So he got uh So why don't you just explain what both the summer summer rec program and the horsemanship camp programs are?
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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.
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So that's why we call summer rec.
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Okay.
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Um summer recreation, you have to be at least finished with first grade because it's a long day.
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We meet at 9 o'clock to 3 o'clock, and it's all day fun.
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Monday through Friday?
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Monday through Friday.
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Uh eight weeks in the summertime.
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And about how many kids would you have out at the the rec program on a given day?
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I think around 20.
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Okay.
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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.
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But some of our activities are fishing.
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Yeah.
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We've done Jace, do you fish?
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Yeah.
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There's n you know like this year we didn't really catch a lot of things.
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Yeah, the pond was kind of I think it was a dry year, so the the fish weren't biting.
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Yeah, last year I think we c somebody caught caught a sta snapping turtle.
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Really?
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Yeah.
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Oh, that must have been exciting.
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Yeah.
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And terrifying.
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They always had to cut the line.
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They had to cut the line, is that what they did?
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Yeah.
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How do you catch a snap?
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I didn't realize that snapping turtles would they just take what's on the hook.
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Okay.
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All right.
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But the star of our show for Summer Wreck would have to be our inclusive playground and our adaptive bikes.
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Those are probably the most popular.
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But there's always crafts.
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We do we just make sure they're busy.
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There's no screen time.
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Okay.
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So we we pull the plug.
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No electronics, no screen on your phone.
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No, no, no iPads, no movie day, nothing like that.
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Nope, nope.
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All outside, all out fun.
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Jace, how do you like the playground?
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I like it, and I also like how my brother can like use ramps and stuff.
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So you and your brother go to the rec program together?
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No.
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Not together?
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Not together, but he goes, and we also go to the playground sometimes.
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Okay.
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So what do you mean not together?
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You're there on different days?
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So there's different like camps.
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Yep.
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So Jace is able to go throughout the school year.
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Okay.
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We cannot support a person if they have to go to summer school.
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Okay.
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So his brother's time there is kind of restricted.
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We're hoping to change that so next year, because Jace attends during sibling week.
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Yeah.
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Because we have a week where it's just siblings come and they get a facilitated sib shop during that time.
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So our hope is next summer to have siblings able to attend with their sibling with a disability.
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Jace, is Jax older or younger than you?
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Younger.
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Younger than you?
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Do you mind if I ask how old is he?
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Seven seven and turning eight soon.
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How is it having a brother who might need a little bit more support than your typical kid?
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I mean, I I love him.
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Yeah.
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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.
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Yeah.
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Do you like being able to share things with him, like the rec program?
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Yeah.
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Excellent.
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And you also talked about horsemanship camp?
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Yep, so that is run the same time as Summer Rec.
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So we're on one side of the farm, which uh we call Doc's side of the farm.
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Okay.
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And then they are horsemanship camp is in the the barn side.
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So with horsemanship camp, they get a 30-minute riding lesson every day.
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And that's something Jace really likes is the riding lesson.
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Um talk about that.
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So, Jace, do you have a favorite horse?
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Um when I did the riding camp, like no, the horsemanship camp, I rode Shine as one of the horses there.
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Um I liked that horse, yeah.
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And then we also I think at the before the camp ends, we do this like talent show on the horses.
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Yeah, they have a horse show so parents and friends can come see what they learned for the from the week.
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Did you ever ride horses before the horsemanship camp?
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No.
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And he's a natural.
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You're a natural?
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He is a natural.
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Are you an athlete?
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Do you play sports?
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Yes, I do.
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I play basketball, lacrosse, and baseball.
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Well, you are absolutely an athlete, I would say that.
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So and how long, so was it this past year your first year riding horses, or how long Yeah.
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Yeah.
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Excellent.
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Excellent.
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Anything else about the horsemanship camp we should know?
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Um, I don't have too much to do with that.
00:13:11.840 --> 00:13:14.000
I do the paperwork for that, but Becky is.
00:13:14.799 --> 00:13:17.600
Is it just riding horses or is it learning to take care of them as well?
00:13:18.000 --> 00:13:20.240
It's taking care of and riding.
00:13:20.799 --> 00:13:27.679
We also do like taking care of the chickens, and we also have like tours like cleaning stalls and feeding the chickens.
00:13:28.240 --> 00:13:33.279
So you come to camp and you you get to interact with all sorts of different animals, right?
00:13:33.600 --> 00:13:35.200
You get to learn to ride a horse.
00:13:35.440 --> 00:13:39.919
And then we also do a little bit of hard labor where we have you cleaning stalls.
00:13:40.320 --> 00:13:41.039
But it's all fun.
00:13:41.279 --> 00:13:42.960
Yeah, no, it's it's fantastic.
00:13:43.279 --> 00:13:44.480
Sounds like you really enjoy it.
00:13:44.799 --> 00:13:46.399
Should we expect you again next year?
00:13:46.720 --> 00:13:47.120
Yeah.
00:13:47.519 --> 00:13:53.840
So, Jen, how do people find out or get more information about all of these different camps and who do they reach out to?
00:13:54.159 --> 00:13:58.720
Well, Mary Schwanke is going to be your initial contact.
00:13:59.039 --> 00:14:02.879
We advertise mostly, I believe, on Facebook.
00:14:03.200 --> 00:14:06.240
Word of mouth is fantastic.
00:14:06.639 --> 00:14:14.879
We go to Life Plans and we talk about offering like other the programs offered that they could attend.
00:14:15.279 --> 00:14:28.000
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.
00:14:28.240 --> 00:14:35.600
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.
00:14:35.840 --> 00:14:41.759
So word of mouth really is like I think the best way to connect with people.
00:14:42.080 --> 00:14:47.679
Facebook, like I said, and um the application comes out.
00:14:49.200 --> 00:14:51.600
Is it best thing really to just get on the Arise website?
00:14:51.679 --> 00:14:51.759
Yeah.
00:14:54.480 --> 00:14:56.720
We've done a lot with the podcast here.
00:14:57.039 --> 00:14:57.120
Right.
00:14:57.440 --> 00:15:01.600
Chase, let's just come back to you real quick, just because we're we're running out of time.
00:15:01.919 --> 00:15:03.600
What would you want people to know, right?
00:15:03.759 --> 00:15:11.919
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.
00:15:12.080 --> 00:15:16.000
What would you want people to know about how they should interact with your brother?
00:15:16.480 --> 00:15:22.080
Um, like he might act silly, but I mean he he's not really trying to be silly.
00:15:22.320 --> 00:15:22.559
Okay.
00:15:22.720 --> 00:15:25.679
Sometimes we he's trying to be silly sometimes, but sometimes he's not.
00:15:26.000 --> 00:15:31.679
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.
00:15:31.919 --> 00:15:32.240
Yeah.
00:15:32.480 --> 00:15:33.600
Yeah, that's great.
00:15:33.840 --> 00:15:35.279
You have any questions for us, Jace?
00:15:35.440 --> 00:15:38.320
Anything else you want to say while we're on the while you're on the microphone?
00:15:38.639 --> 00:15:38.960
No.
00:15:39.360 --> 00:15:40.000
All right.
00:15:40.320 --> 00:15:41.600
So thank you, everyone.
00:15:41.679 --> 00:15:42.399
That was Jason.
00:15:42.639 --> 00:15:45.440
Uh thank you, Jason Jen, for spending some time with us this morning.
00:15:45.600 --> 00:15:48.399
Ladies and gentlemen, that was Jace Downing and Jen Barkley.
00:15:48.720 --> 00:15:56.799
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.
00:15:57.600 --> 00:16:06.639
This has been the Arise Exceptional Family Resources Podcast with CEO Bruce Drake, recorded and produced at the WCNY Public Broadcasting Studios.
00:16:06.799 --> 00:16:11.279
For more information, visit our website at contactefr.org.
00:16:11.360 --> 00:16:13.120
You can also follow us on Facebook.
00:16:13.279 --> 00:16:14.639
Thank you for listening.