From WXXI news.

This is connections co-hosting this hour with my colleague Sarah ABBA monti.

I'm Evan Dawson.

Our connection this hour is made with a cliff of sorts.

Writing for USA today, Michael Berube describes it in a piece titled Don't Let My Son Plunge Off the disability Cliff when I'm gone.

He writes, quote, imagine you're driving 80mph.

The road ahead ends in a precipitous descent.

What lies beyond the cliff's edge?

You can't see.

You only know that you're going to fall hard and fast.

And you desperately hope that someone or something will cushion the terrifying drop.

It's a dramatic metaphor, but figuratively speaking, it's not far from the reality of what happens to people with disabilities and their families when they fall off the so-called disability cliff.

That's how we describe what ensues with an individual with disabilities, turns 21 and ages out of the support systems that have sustained him or her from infancy through adolescence.

It's where the law ends, and a dark, uncertain wilderness begins.

End quote.

Berube has an adult son who has significant day to day needs, and he poses some difficult questions.

What happens for people who can't take public transportation or make dinner, or balance a checkbook for parents?

What if they work full time and can't take time off to care for their child during the hours he or she used to spend at school?

This is not a new issue, but it remains a very challenging one.

This hour, we take a look at how one local program is attempting to fill in these gaps.

Sturbridge is creating Life After High School program is designed to help, and Berube concludes his piece about his son by saying, quote, it takes a village to keep him and other young adults with significant disabilities from falling off the cliff.

We must nourish and support these social arrangements.

They are a powerful social good.

End quote.

Our guests will have a lot to say about it, and everyone's story is different, but I think it's a great chance to understand that only one program is doing, but also how how individuals in our community, how families are doing and how they navigate this.

Let me welcome them now.

Kristen Lopez is director of marketing and communications for Star Bridge.

Hello, Kristen.

Thanks for being with us in the studio across from Kristen.

Let me welcome Jake White.

why?

Sara I'm going to say it again.

Jake.

Boy, oh, boy.

I spent the whole I got transfixed by this pen here that Jake made and my my brain stopped here.

Jake Weiser, thank you for being here, Jake.

And it's great to have Jacob here along with his mom, Kelly.

Kelly Wiser is a parent of Jacob and the school psychologist.

It's great to have you in studio.

Thank you for being with us.

And let me welcome on the line.

I think we have, Jean McCrum, who is with us.

Hi, Jean.

Are you there?

Yes.

Hi, Ellen, I am, thank you.

And Jean's with Maggie McCrum, who is a graduate of the Creating a Life After High School program at Star Bridge.

so hello to Jean and Maggie McCrum.

Great.

Having both.

Hi.

Hi, Jean.

Hi, Maggie.

Thank you very much.

again this hour.

this is a chance, I think, to try and understand an issue that, as I mentioned off the top here, if you're a long time listener, you might have remembered a series that we did years ago via a podcast called exited.

And my colleague Sarah Eva Montana, we were discussing before the hour began how some of those themes, while many, probably the whole series, could be released today and I'm not sure.

Absolutely.

Would anything be different?

Maybe.

But the grander, you know, overarching themes that that are discussed in that series would definitely, still resonate for folks.

Well, and so I want to start by asking Kristen, who is the director of marketing communications for Sturbridge, a little bit about how your organization sees this issue.

We're going to go into depth about the program and about what Jake and what Maggie have been doing.

Before we get there, though, how do you see in general our society's preparation for this, for this problem?

And if it's gotten any better?

Yeah.

So, you know, many families that have children with disabilities, they're left wondering what comes next, right?

Like what happens after that bus stops.

And the school sometimes has resources, but, often they're kind of left alone to, you know, to figure out what comes next afterwards and, what creating a life does for families.

It really allows them to come together to learn all the resources and to create a vision.

And I think that's really important about this, to understand is that it's giving the child a choice.

And I think oftentimes, in our society as parents, we're left making the decisions for young adults.

And what this allows people to do is, is to give them a voice and decide, you know, who, where do I want to work?

Where do I want to live?

who don't want to take care of me?

And how do I see my future?

And so it's a really person centered and right now, there's a lot of families that think that school is going to take care of the solution for them.

They turn 21, school ends and there's like, okay, they're going to help me with the next transition, and they're not prepared.

So what this program does is it really fills that gap between adult services and again, school services that are available.

And Sarah, maybe, maybe this is a good time because of what, what Kristen is talking about when it comes to wanting to work and, and to have a self-determined life and have a lot of autonomy.

But before the program, Sarah and I were talking about how people feel when they really learn what work has been like, not everywhere, but in a lot of situations.

For people with disabilities.

you want to talk a little bit about that?

Sure.

Yeah.

I mean, we were discussing things like, you know, asset levels in order to receive services and folks that are employed in what we call sheltered workshops and are therefore being paid subminimum wage.

And I think a lot of our audience really isn't aware that that's even an option.

And we talked a little bit about the kind of benevolent ableism that led to that situation.

But, Kristen, maybe you could share with us a little bit more about what the employment landscape is for people with disabilities.

Yeah, right now.

And, Monroe County there is over, I want to say, 35% of people with disabilities living in Monroe County.

And out of that, probably more than half of them are living in poverty.

So if you think about that, just as a general landscape in a local area, the opportunities to move up, it's it's they're not living within their means.

So, you know, not only are you entering the workforce having a disability, but then you're also entering the workforce, not being able to meet your your needs.

And a lot of the systems necessarily might not talk to each other.

They might not accompany had each other.

So we're trying to make this awareness to say just to say there are options out there.

There are opportunities, there are pathways that are available, and try to really change that number and also to make people with disabilities a forefront of the decision making.

I think that's really what's key here too, is that a lot of times it's other systems, other people dictating, you know, those levels and we really want to change that landscape here and say, no, you're the decision maker.

You're at the forefront of your life and your journey, and hopefully those statistics will change in years to come.

What's the phrase you used?

sheltered workshops.

Sheltered workshops?

Yeah.

Can you tell us a little bit more about that?

Yeah.

So, this was, a caveat in the law that allows employers, I say benevolent ableism because the thinking behind it.

And, Kristen, feel free to jump in if I'm, talking out of school here, but, the idea behind it was that people with disabilities were not employable.

Other other than incentivizing employers to bring them on.

In this case below minimum wage.

and there are still opportunities like that for folks.

but really the movement, you know, in the past couple of years and decades has been to get rid of sub minimum wage jobs to bring folks up to, the same level that other folks are doing the same kind of job.

And provide meaningful employment.

And, and again, to Christine's point, that self-determination, that self-advocacy.

Yeah.

I would agree with that.

for sure.

And, and it's slowly and surely changing that landscape.

even Star Bridge Organization, we are going out and educating employers on what does that diversity of having a disability bring to landscape and changing that just ableist view, as you said, that, you know, people with, people with disabilities can only do certain levels of work or certain levels of job.

And I think what again, we're slowly seeing that take or change, it's slowly the landscape is changing.

but organizations like ourselves and others that are out there really need to, bring people in who have the disabilities to get their voices heard.

You know, it's one thing for us to kind of talk about it, but it's really another thing for those that are living at day to day to have their voices be heard.

And let me just try a little contrast to something that the, the original way that it hit my mind when I heard it as a podcast and when I first learned about Subminimum wage and things like that was it felt pretty nefarious.

It felt pretty dark.

And when Sarah uses the term benevolent ableism, it's the way I hear it is.

This may be well intended, or this may be people who think that they're doing something good.

and yet, the outcomes cannot be it might not be the best for the people who.

Yeah, the sense of being served.

Yeah.

I mean, that's a direct result of not having disabled voices in the room when these decisions are being made, which is why we advocate so strongly for that.

And, you know, really, it's changing those hearts and minds that's then going to change public policy and public attitudes.

So the more people, are listening to the voices and, and hearing people with disabilities say, this is my experience, this is what I want.

This is how I want my life to look.

then it's that it's that change.

If you haven't have that lived experience, there may be a failure of imagination, but by bringing those folks into the room, then you're more able to make these informed policy decisions.

And so before we turn to the white House for their description of what what life has been like in their household, let me just ask, Kristen, how people find Star Bridge.

Yeah.

So many people come to us, when you know they are in a transition.

So we service.

Star bridge is an organization that covers all of New York state.

We serve over 16,000 people, over the state of New York.

And really, we partner with people with individuals.

I'm sorry, people with disabilities and their families to access resources like advocacy and education and employment and transition, and healthy life skills.

So a lot of people can come to us either from a family member possibly referring them or, a teacher or an educator or even their, you know, care manager.

we get various different referrals, really.

We kind of are, the heart and soul of collaboration.

And so many people come to us at various different stages.

And, when they come to us, they're you're looking for services for help, maybe possibly with school issues that they're having.

It might be they're transitioning like Jacob who's here who, you know, is saying, what are my options after school?

Or I might get some people are saying, you know, I want to learn some more life skills so that I can, you know, get my next job or, you know, I want to I have a hobby out in the community, and I want to I want to learn, how to do something that would make me part of my community.

And so, all levels of the spectrum, we get people at various different ages and various different stages of their lives.

our website is a great resource.

It's, Stockbridge Inc, dawg, and our intake form is right on there.

So as soon as someone fills out the intake form, it goes to our team and we can kind of, take a look at what their needs are and pair them up with our best program or services.

How many people do you serve?

Over 16,600.

So, we cover all of New York State, except New York City and Long Island.

and, you know, so if someone calls us from Allegheny County, they can reach one of our intake specialists who can assist them with, you know, maybe it's navigating services in school, or perhaps they suspect something is wrong with their child, but they're not quite sure how to communicate with our school team.

we have core community partners that are out there that can really help them, bridge the gap of that communication and put a plan together so that they can continue to work with our school and continue to see the progress of their child.

Well, let's turn to the white House for their story.

Kelly and Jake are here, and I'm going to give Kelly and Jake some time to tell us about themselves and and how you ended up on a path to find Star Bridge.

And then we'll talk about what that has been like.

But, Kelly, Jake, you want to start?

I can start, yeah.

So, Jake, do me a favor.

Just get real close to your microphone when you're speaking.

Yeah.

You guys also give me the loudest chair possible.

Oh, sorry about that.

I've been, like, just back here, like, try not to, like, ruin, not to squeak it.

That's it.

Like, that's a good note for us and the engineers.

They're very good note.

I appreciate we've got once in a while they get some WD 40 maybe a wrench.

So Jake, tell us about you.

so I'm 17, I'm at, Penfield High School.

I'm doing Boces, lollipop for, small animal care.

Okay.

And, mom, you want to jump in with a little bit more?

Sure.

yeah, that's the basics of it.

he is, in, Penfield High School right now.

And, we, have intentionally worked with, the school who have been great with us and have, developed, pathway for the next two years.

He's actually on an extended plan.

because what you find, is in these later years of transition, you're trying to pack in as much as you can into that school day.

so we're actually going to be spending some additional time, for him to earn.

right now, the plan is for a local diploma and then with vocational and, employment training, and job skills coaching.

Tell me a little bit more about trying to pack into that school day, that the mindset that you have.

Well, we have a, when you when you're into the period of time for transition, things go really quickly.

you only have a certain amount of time that you have left to work with your school system.

and then after that, you're also simultaneously as a family trying to look at the adult services and get those up and running and in place.

So you enter this period of time where you feel like you're somewhat on a little bit of a hamster wheel, like the time is, is of the essence that adulthood is approaching.

And you have to, work quickly to put in place the services and supports, for when you make that exit, you have a smooth transition into adulthood.

Okay.

And I think before the program, Jake said six months can go really quickly.

Yeah, a lot can happen in six months.

Yeah.

A lot of good stuff I should say.

Okay.

I mean I'm, I'm encouraged to hear that.

What are the good.

What's the good stuff.

I mean obviously I attended Sturbridge.

It's been like six months since we started there right.

Yes we did we did the Creating Life After High School program in October and November of this year.

Okay.

School year.

Jake, what was that like for you?

I love the program.

If I could do it again, I would, I would recommend it to anybody who is wondering what they're going to do next.

And how do you think it helped you specifically?

I think it helped put me on the right path to meet the right people.

and just make the right connections to just opw and, just the community in Rochester in general.

So, Sarah, the idea of getting connected to people, whether it's individuals who might be able to help you in the future, resources and services, that's an ongoing theme, isn't it?

Oh, absolutely.

Absolutely.

We're in a very resource rich area here in Rochester.

We have lots of organizations like Star Bridge and others.

But, you don't know what you don't know.

And so these human connections are so important to finding just folks who have gone through it before and saying, you know, this was my experience.

Let me help you, navigate this and then putting into place all of those support systems.

It's it's really, I mean, you know, the folks here on our panel can probably speak to it more eloquently than I, but the the plugging in and the making sure, that you have the best team or collaborative approach for your child or young adult.

And so to the why, Cyrus do you feel, Kelly, like you've got that a better team, a better mindset in place now?

We have made a lot of progress this year.

when we first heard about the program, Jacob wasn't actually eligible yet because to join the program, you have to have, eligibility through Office of People with Developmental Disabilities or OP.

We've only had eligibility for OP since last June of 2024.

So when we obtained eligibility, I reengage with Star Bridge.

And that's how we were able to enter the conversation.

so we consider ourselves really, really new.

when I arrived at the program and in the classes in the evenings, every single area was new that we talked about.

we talked about Jacob had, and maybe he could talk a little bit more about it.

and I'm sure Maggie will as well, that they created, a life plan, a vision board of how they would live, learn, earn and, have fun.

And this for us.

It was the first time we ever had those conversations.

we had not had as a family any real significant discussions of what was going to happen as we proceeded through this transition.

We're still, trying to figure it out.

Like we don't have to answer very much in the middle of that process, so.

Well, Jake, a 17 year old, I don't know anybody who's got it.

All right.

I will, I will.

I look at the track, I will say talking to you.

I mean, you've got a lot of insight into how you are trying to go about this now.

so let me ask you kind of two different shades of this.

Yeah.

What what worries you most about the future?

just like the uncertainty.

you know, like, I don't know what could happen in a given day.

Like, you know what?

What will happen in a few years?

Who knows?

What about you, Kelly?

What worries me the most?

Same thing.

I think wanting, to work towards independence, I think, again, always on the mind of a parent is what would happen if I wasn't here.

so it's hard to infuse that into a conversation without making your children pretty anxious about that.

But it's a it's a hard one.

But I have to say that too often.

Yeah, yeah.

What you do without me, I do.

I couldn't I couldn't do anything without him.

Mostly without mostly when I'm lifting stuff out of a car, he can't.

He carries all the heavy things.

that's not exactly weekend.

We have to talk about that, though.

And that's a hard conversation to have.

And so, Jake, what excites you the most?

you know, my hobbies, would turning.

So what?

Turning?

Yeah.

And is that related to the pend?

Oh, yeah.

That.

So that is how I do.

So I mean, for those who are watching on the news YouTube channel, maybe you can see.

So I'm holding one, but there is a whole case of absolutely beautiful writing and I think so.

Yeah.

so tell us about this jig.

so I, I make them on a lathe, I get the, the kits, you know, just from places online, places locally.

not sure if I'm allowed to mention the places locally.

I think you can.

Yeah.

Oh, okay.

Well, I, I've been getting, kits at Woodcraft, so it's great.

but.

Yeah.

So you get the kits, you get your acrylics, you drill them out or wood blanks, and you drill them out on the lathe.

And then there are these, so they start as like blocks of material, and then you get a brass tube that you glue inside.

And that's how all of, like, the, the pieces fit together.

This, they just friction fit and, I think if you gave me a thousand years, I don't think I could make one of these.

I learned how to do this, and it was, like four months since December.

Yeah.

And it's a direct connection to creating in life after high school, because, the young adult participants, receive $1,000 grant to put towards their life plan.

Jacob opted to use his thousand dollars for, annual membership to the Rochester makerspace.

you want to tell them what kind of classes you take?

They're, I've taken a lot of really cool classes there.

I've taken.

So they have, like, 3D printing there.

I've taken that course.

I've, used the laser cutter, a fair amount there.

I've taken that course as well.

They had, two classes on woodturning, so there's the basic course I took, and then I took one for both turning my, I can turn balls.

Not very well, but I can.

It's it's a work in progress.

see, I've taken, like, the woodshop class machine shop business.

Business class?

Yeah.

And then the other part of the funding he received, he put towards, pen making supplies and tools.

it was something that he had identified that he really wanted to try and, you know, like you said, it's we've networked.

We found people to support him, to teach him.

And, as you can see, the results are really amazing.

you know, he's become an artisan in that period of time.

I'm not an artist.

Oh, yes.

You.

I'm sorry, man, but you definitely are.

You really are.

These are.

These are truly beautiful pens.

Thank you.

and so before we turn to the mic crumbs here, I just want to ask you a little bit, Jake, about, you know, when you think about what excites you about the future and following those passions, do you feel like there will be enough opportunity for you to do what you want to do to to explore a little bit, to experiment?

I mean, do you feel comfortable knowing that whatever the future is, you know, you're going to have some space to do what you want?

Oh, yeah, definitely.

That's good.

Yeah.

And you're also very comfortable talking about, you know, being 17 years old and not knowing what the future 17 is hard.

yeah.

I would not do it again.

No, no, I don't want to do it.

I'm halfway done now.

So, but I'm.

You talk about a lot of things very comfortably.

What is what does it mean to you when you think about the I, the idea of disability?

you know, I think we all have, disabilities.

you know, I, I know me personally.

I'm like, I have, like, ADHD and, fetal alcohol spectrum, so it's just, I think we all have disabilities in our own ways.

And I think we all have to, like, figure out how to manage that.

But it's doable.

Like, I'm alive somehow.

So I'm doing it.

Do you think that, the people around you, whether it's teachers, maybe future employers, do you feel pretty comfortable knowing that you can have the kind of conversations you need to make sure that they understand your disability and that, yeah, that it's going to, you know, it's going to be a good working relationship.

Yeah, yeah, yeah.

Most people are usually, pretty open, like having that conversation.

That's good.

And a lot has changed in understanding ADHD.

nodding over there.

So yeah, definitely.

Definitely.

And I think it's so important.

yes, I work here.

This is not an a shameless plug, maybe a little bit, but, you know, we have such great supports here at KCI.

It was a long journey.

I was diagnosed with ADHD quite late.

Later in life than than a lot of people are, although we're seeing more of these later diagnoses and and having that supportive work environment is so important.

What whatever your needs are, physical, neurodivergent, whatever you have going on, having colleagues and supervisors who are willing to work with you and how you can succeed and, work best, in the workplace.

So, I mean, ADHD is a diagnosis for you.

What did that open your mind to?

What did that explain to you?

Oh, we were talking about this off air, actually, it it let me lift off a lot of the, judgment that I had put on myself.

The moral judgment I put on myself as an individual, thinking like, I can't do this, or I'm really bad at that and starting to learn about how to work with my brain instead of against it.

And that made things so much easier.

And it just, it lifted this huge weight off of my shoulders.

And and now I'm, you know, I think disclosure is a very private and personal, process for everyone, but for me, I try to be as open as possible because I want folks to not have those feelings that I had.

And so if I can alleviate that for anyone or be a resource or a support for anyone else who's going through the same thing, then I want to be that person.

It's remarkable.

And for you, Jake, do you think about how ADHD do you feel like you're working with your brain and not against it now?

I mean, how do you feel?

You know, I feel like we all kind of have ADHD sometimes.

but no, I feel like, definitely, ADHD medications can help.

Definitely.

Just kind of like a whole, like, channeling your energy into something else.

Like pen making or whatever.

Like just doing something like exercise, whatever helps a lot.

But I feel like, yeah.

Kelly, how do you feel about that diagnosis from how is that how does that help?

well, it's part and parcel of the, Fasd diagnosis.

They're kind of all tied together.

were relatively new, to, to the diagnosis and to, again, these support services.

so I think it's helped us a lot in terms of reframing things and again, looking at things from that brain based lens and starting to ask the questions about being curious about behaviors, being curious about areas of need and saying, okay, what do we do to support and accommodate?

and that really has reframed so much for us.

from everything related to school to home, to looking at his transition, Kristen Lopez said that Sturbridge works with more than 16,000 people.

how much does this this story feel emblematic of the work the organization does?

These are the voices that we hear honestly every single day.

And it's, you know, we, Kelly and Jake, are just one story, but, every family wants to feel valued, heard, respected, and regardless of at school, jobs, employment out there in their communities.

So, this story really resonates and it brings hope to I gotta I gotta tell you that, Jake, hearing your story and seeing that, you know, you have a really hopeful future, because for some families, it's that's that's not the story.

and just hearing, like you said, how much has changed in six months in your life and where you were six months ago, too?

Honestly, these pens are beautiful.

I want to steal them.

I think we should open up a corporate account.

I mean, can you put a Starburst logo?

So the thing is, I actually I talked to somebody about that.

Yeah.

Okay.

Well, I might be able to make that happen for you.

All right.

He actually has a plug.

My Instagram.

He actually has an art show tonight.

I do, yeah.

Showing his pens, in, Stony Point studio.

Art studio in Fairport.

So, he's a pop up artist, and he will be, displaying the process of pen making and displaying his patterns.

Awesome.

And I believe that art studio was covered by City magazine a few months ago.

There you go.

Yep.

And they also work with Sturbridge.

They do.

Fantastic.

So after we take our only break video, we're going to talk to them, the crumbs about their story.

And you're getting to know some of the kinds of services and support and and frankly from the why hours why it really, really matters, especially as you approach adulthood.

if you're a child with disabilities, if you're family working through that.

And so Sturbridge is here, we're talking to the white hours.

We'll talk to you in the crumbs on the other side of this only break on connections.

Coming up in our second hour, Sara and I sit down with the panel to talk about what RFK Jr has been saying about autism.

If you haven't heard, we'll have some of those remarks and audio for you, and you're going to find out why some families and some individuals with autism have been outraged.

We're going to talk about not only what RFK says, but where the system works and where it doesn't.

Next, our.

Support for your public radio station comes from our members and from Mary Carolla Center, proud supporter of connections with Evan Dawson, believing an informed and engaged community is a connected one.

Mary Carrie ola.org.

This is connections.

I'm Evan Dawson looking at some of the data that we had talked about earlier.

and some of the data that Kristen Lopez had had hinted at from, from Sturbridge, the in the city of Rochester alone, people with disabilities have about a 40% poverty rate.

And that's a, city of Rochester.

We know that.

We know, like a lot of American cities, has a higher poverty rate.

The poverty rate than the national average.

But if you have a disability, it is really significantly higher.

In Monroe County.

It's mid to upper 30s.

And that has that got to change over time.

So that's part of what we are having this conversation about is what happens in that transition to adulthood.

What services are in place.

what are organizations like Star Bridge doing and Star Bridge not alone.

in this in this field.

But they serve a lot of people.

And we have met Kelly and Jake Weiser, and Jeanne and Maggie McCrum are on the line with us.

And Jean is the parent of Maggie, Maggie's graduate of creating a Life after high school program at Star Bridge.

So I'll welcome you back.

Jeanne and Maggie.

Hello there.

Hi.

Hi.

Thank you.

So I'm just going to ask Gene, to start.

and Gene and Maggie can both tell us a little bit about yourselves, and I'm sure Sarah and I will have a lot to ask you guys.

You've been listening, and I know Gene, you want to tell us a little bit about you guys?

Sure.

I'll start by our own experiences with Sturbridge.

And you're talking about, you allergy of going over the cliff.

Well, Sturbridge caught us before we went off, and that was creating the life after high school.

And that was a dream for us.

I'm sorry I said I'm very thankful for that.

And, Christoph, shout out to our staff.

I was going to go to.

Yeah.

And so it was the game changer because like Kelly was saying, I can really relate to what you were saying.

Kelly.

That was the first time we ever thought about, Maggie's life like that.

Maggie having a full life and thinking about all those different pieces coming together, and Maggie having the ability to have the choice to make the decisions about what she wanted to do.

And so that that was a real significant point.

And, and Maggie's, journey, you know, kind of the beginning.

And it was a while ago, it was like we were just talking about last night.

Right.

Maggie, is asking me, actually, we actually did a presentation last night for Christa, and I believe I met Jacob reading The Life years ago.

Yeah, we did, I think a couple of years ago when.

Yeah, I remember thought, I think we met in the fall when I one of our sessions.

Wait, what's wait.

And Starbuck.

Yeah, I never met.

Yeah.

I don't remember which one, but I think oh yeah.

Okay.

Yeah.

I said, Maggie, we're so glad to have you with us today.

I'm wondering if you could share, a little bit about your experience in the program.

we just talked quite a bit with Jake about, his plans and his visions, and I want to hear what you're into.

Yeah, sure.

well, I'm actually 28.

Next month, I'll be 29, have my birthday.

Thanks.

Jeez, I feel old.

I feel I feel too, so the youngest people on the panel admitting feeling old.

I know my back hurts.

Okay?

I have back pain every morning.

All right, enough of the old talk.

Let's get back to Maggie.

Go ahead.

Maggie.

so you said.

Tell me about yourself.

Yeah, yeah, we.

Well, I like to be a self-advocate for people who are disability like disabilities, so I like, meaning if anyone possibly wants to reach out to me through Instagram or anything, I'm open to that.

Awesome.

How would we find you on Instagram?

Maggie?

My username is OG mags.

The Munch I love that.

Well, I'm going to be following it immediately after this episode.

All right.

Thank you.

And let me jump in Maggie, with just tell us a little bit more, about what this program, maybe how it helped you.

I want to hear from you.

And then we'll ask Jean the same question when you go to the when you went to the Creating a Life After high school program, what was that like for you?

well, at first I was a little hesitant because I didn't know what to expect since I was not treated very well at my public school, but I'm glad that I ended up doing it because everybody there was so sweet and so nice, like Krista and Maritza and Kari as well.

Shout out to her.

She's listening.

But yes, I love doing creating a life after high school.

And whenever I hear Krista ask if I can come in to present with my mom, I immediately say, sure.

Why not?

But it's great.

Awesome.

We love that.

Jean, was there anything you wanted to add?

Yeah, I, we just had an amazing experience.

We were at the very beginning, like, Jake and and Kelly are now.

And so for us, it was, eye opening.

We had never heard or seen anything about so many different options.

And it just really, made us think about the possibility.

And, you know, gosh, there there are a lot of things that Maggie could do.

There are a lot of paths that she could go down.

And it just was amazing to know that, because I had no idea.

What are you saying, Maggie?

I'm I'm hoping you can kind of go back to what your time in the program think about what were some of the, goals and and dreams and visions that you had for yourself.

And now, you know, being a couple of years outside the program.

how does your life look in comparison?

Is it, is it how you anticipated?

What are the differences?

I actually did not anticipate where I would be right now.

Tell me about, I'm in a better place right now because at the time, I was going through, some things, but.

I'm doing better now.

So probably some of the things back then that I wanted to do or was interested in.

So for my, section, like we're talking about the vision boards, my earn section was singing and modeling, but now I am employed at North Star Cafe, which is in Canada.

Okay.

Yeah.

And I work there four days a week, four hours, four days a week.

So I don't know how many hours that is total.

Or do you know what that is?

Mom?

you work about 16 hours.

Yeah.

Yeah.

Yes.

And I'm very thankful to be where I am today.

If it wasn't for my mom or anyone else that has helped me along the way, like I said, I don't know where I'd be.

So I'm just thankful to everybody for being by my side and trying to help me.

Oh that's beautiful.

Yeah, yeah.

And I, you know, Jean, we asked Kelly and Jake about when they think about the future that can be a very exciting time.

It can be a very nervous thing to do.

you know, to to Sarah's point, Jean, I mean, Maggie's got some a little bit more distance between herself and being in this program with Star Bridge and has already felt the effects of it.

You know, Jake, just just going through this program at 17, thinking about this for you, Jean, when you go back to maybe ten years ago and or even, you know, five years ago, what do you see for Maggie's future?

How does it compare to where she is now at the ripe old age of almost 29 and then and and and now when you think about the future, what does it look like for her?

It's a totally different picture now.

And where you were before, I have to say.

And, it's much better now.

It's comforting to see that Maggie has found a job that she really likes, and everybody there really likes her.

And, it's, just a great experience for her.

And it took so long for her to get there.

She went down so many different paths, you know, and, you know, when we started down each of those paths, it was like, okay, what is going to happen now, you know?

And is this is this going to work out?

And I have to say, you know, we have had support from so many different agencies now.

So we does things differently.

It's really great because Maggie has, had support from lifetime assistance or Monroe or Ontario.

and Sturbridge, you know, and it's, you know, all of those different agencies together, like you were saying in the beginning, it takes a village and it really has.

And Maggie has had wonderful supports, and we couldn't have done it without them.

Maggie wouldn't be where she is now without them.

So I am comforted by that and comforted by the fact that Maggie has, found her way and she could probably talk about other things too, that were on the vision board that she has actually, you know, realized in her life, too.

And so, although I feel like Jake and Kelly were saying, you know, the uncertainty is worrying, what's going to happen when I'm gone, when her father's gone, you know, but I think she's in a much better place now.

And I think just society's acceptance of people with disabilities has become better.

And that makes me feel better, too.

And along with that, and Maggie supports and and just Maggie's determination and self-advocacy are going to take her where she needs to be.

Maggie, what else was on your vision board that your mom talking about?

I believe for the learn I wanted to learn how to crochet and then cook and other things and with the crocheting I have been able to get into things like that more because, oops, I almost fell backwards with my community.

Habilitation person has helped me with that and has helped me with many other things that I've been wanting to do, but wasn't able to because I didn't have good transportation.

Yeah, yeah.

I'm wondering about no go ahead Jean.

Oh I just wanted, I know Maggie really wanted to talk about a recent trip that she has taken clean and yeah.

See how she or how she got there.

Yes.

I recently took a trip to Boston to see the learning yellow triplets.

There are actually YouTubers and like my mom said, I organized everything when it came to the trip.

I bought the tickets.

I made sure everything was taken care of.

but, I made reservations for the hotel.

I paid for the gas.

That's amazing.

So you.

So you drove from here to Boston?

Yes.

And I did that with my community rehabilitation person in my car.

That's great.

I've made that trip quite a bit.

My sister lives in Boston, so, it is it is not the most, you know, visually appealing road trip, I hope.

I hope you guys made stops.

No, it is not.

Oh, we went to Salem.

Oh, great.

That's fun.

so.

So tell us a little bit more about what that process was.

How did you, So you found out that these triplets were going to be in Boston, and then what were the steps that you took to put the trip together?

they're actually from Boston originally, but they live in Los Angeles part time.

So what I had to do is they actually announced that they were going on tour around February, I think maybe January, February and then.

Well, since they're so popular, a lot of girls, well, mostly girls had to buy tickets.

And if you were under age, your parent would have to do that.

And it's kind of hard with buying the tickets or really anything when it comes to YouTubers like that, because they're popular and they're three really good looking dudes.

So yes, and my favorite is Matt.

He's the middle triplet.

But anyways, back to the question is were saying, Yeah, they announced the tour.

So I guess one of the steps was that you had to buy the tickets and you had to some.

I guess some of the people who want to do didn't end up going, so I feel bad for them.

But I actually met a couple people who went who are from Rochester here.

I'm like, oh wow, I didn't know that.

I think I was the only one who liked them from Rochester.

Creating community.

Wherever you go, Maggie, there you go.

Yeah.

and by the way, Jeanne, let me just ask you, I think it was your family that was, that we featured in part in our extended series, right?

Yes, yes, yes we did.

That was Karen Chookagian.

Yeah.

So, so and so great to hear Maggie doing well.

And listeners, you can still find the, the WXXI extended podcast series, as Sarah and I said at the start of the program, unfortunately, that's still very much the same.

Yes, in terms of, resources, challenges, etc., but really still very, very much pertinent.

And it's part of our stable.

So podcast, which is going to be growing.

I also want to read this comment that came in via the YouTube chat.

Jeffrey says, Holy cow.

Yes, working with our brains instead of against our brains is such a simple, yet very important, and we're going to have to make sure it's made.

Anyone can make this.

Yes, exactly.

so yeah.

So, Maggie, let me just ask you about them.

We talked to Jake.

he talked about ADHD.

And, when you think about disability, you know what?

What does that word mean to you?

Maggie?

To me, the word disability means, it's something that you may have, but it doesn't necessarily limit you from doing anything.

So for me, I would say just because you have a disability, disability, that doesn't mean that you have to limit yourself to one thing.

So it's like kiddy pool versus versus big kid pool since, you know, do you guys know how big the ocean is?

Okay, the ocean is full of opportunities.

Jean, how would you.

And don't give up on what you want to do, I. Oh thank you Maggie.

Yeah, we all need that reminder.

No question.

speaker.

Writer.

Jean, how do you feel about the idea of disability?

I, I don't even I think Maggie does really well, you know, just spite or, you know, not just spite, but just because she has a disability like you said, it doesn't limit her.

And she has really shown that she can be successful.

And, you know, she's proven she has it.

She's got a great job.

She she can travel.

She can do so many things that, a long time ago, you know, you never know.

You never know what your son or daughter can do when, when the diagnosis comes.

But, Maggie has has proven that she can be amazing.

Well, let's ask Kristen Lopez from Sturbridge about that.

You talked about the wife's hours.

Tell us about the McCrum story.

What do you think?

What do you hear there?

Maggie is wonderful, and she is a beacon of hope, honestly.

And, I think, you know, Gene and Maggie, it's it's amazing the opportunities.

And I love the the fact that, you know, it's been almost ten years since you've gone to the program, and Maggie's still coming back and and talking to the participants that are in the program.

And that alone is is hopeful because it gives those families that are going through the program, you know, like, like Jake, you guys just went through and you I think you said you saw Maggie speak.

It gives you the opportunity to see, like, wow, there is hope and there are pathways and there's opportunities.

And, I think it it leaves you it's alleviate some of those fears.

Right.

It alleviates the fears of of what's next and what's to come.

And, is my child going to be successful?

I think all of us as parents, you know, have that in the back of our mind, like, is my kid happy?

Are they going to, you know, be happy in their job or where they live or, you know, when they're adults.

And I think to see Maggie's story here, she has it almost 29 years old, successful.

And it's her voice making those decisions.

Right.

you know, I'm a parent of a of a child with the disability myself.

And although he's 11, I make a lot of the choices still for him.

But Maggie and Jake, they're examples of they're making their path and they're making their choices and their voice heard and how they want to live their life.

And I think that's the most important thing to understand and to hear and, why this program is so successful is because it gives these, these young adults opportunities that they might not have seen before.

And then as they get older, they can kind of take a look back and say, I have I have choices, I have a voice, I have a path forward, and I am going to be successful and, my life is as meaningful and is fulfilling according to how I want my life to look.

And when I look at Maggie and her mom, that is definitely something that I see is that she's happy.

And I think, Jean, when you and I spoke yesterday, that's what she said.

She's happy.

She's living.

She's living her life according to what makes her fulfilled.

And that's the most important thing.

But we're going to lose the hour in just a few minutes here.

And one of the things that I think about a lot when it comes to everybody's very busy schedules, when people say, well, I really care about something, I like the idea of, well, don't tell me you care.

Show me your calendar or don't tell me you care.

Show me your budget statement of priorities.

So let me just ask the parents before we go here.

You know, Kelly, you've talked a lot about how how Jake's doing and what you've really learned in the last few years.

But are there still gaps in society that you want to see filled?

I mean, what do families like yours need most that maybe they're not getting or that could be improved?

that's a that's a tough question.

I think sometimes for us, we do feel very isolated.

I think that, you know, you know, you have to keep in balance that, families, that are caregiving for a person with a disability still has to go on with the rest of their lives.

So you're still working, you're still grocery shopping, you're still, you know, vacuuming and dusting and doing all the things.

But you have all this additional piece on top of it that really takes most of your free time, to navigate services to do the research, to engage with the agencies.

you know, Jean just mentioned like 5 or 6 agencies.

So we have almost another full time job on top of, just operating our lives.

And that, again, doesn't leave a lot of time for those social connections, those, other leisure activities that one might do.

So it can become very isolating and it can become a lot to manage because you're balancing those things.

But a minute left here, Jean McCrum, you want to add to that?

I so agree with what Kelly said and I and was talking about that yesterday.

Think about how isolating it is to be a parent of a child with a disability and isolating to the to the child themselves.

So, yes, I totally agree.

And another practical thing to do is transfer station transportation is such a barrier and that takes up a lot of time.

Q I am driving Maggie a lot every year while she's taking driving lessons, and we're trying to, you know, figure that out.

And, but I totally agree with what you said, Kelly.

It can be very isolating.

Well, I really want to thank everyone who has taken the time to come in and tell their story this hour to the McCrum, Jean McCrum, Maggie McCrum.

Great to.

Well, I was going to say meet your great to catch up with you since the days of the accident podcast.

Yeah.

Same here.

Thank you.

Yeah.

And I just want to say that if anyone is in within the Canandaigua area, please stop by Northstar.

I would love to meet you.

Northstar.

Coffee's great.

I have been there a number of times, and I wonder if we've already met Maggie.

Because I'm going down there.

Oh, maybe when I'm adding it to my list, we might.

So that's Maggie and Jean and, Kelly Weiss, our Jake Weiss, our good luck to both of you.

Can I plug my Instagram?

Yes, please.

Yeah.

So you can find me on Instagram at Jake.

W, dot Jake dot dot woodworks.

Jake.

Jake dot w dot woodworks.

Yes.

An art show tonight.

Art show tonight.

Yep.

In Fairport Stony Point studio.

Good luck to you.

Thank you.

Great work here.

Great getting to know both of you.

Kristen Lopez from Sturbridge.

Thanks for telling your story.

Thank you for having me here.

And I really appreciate just getting more awareness out about this program and what's available in our community.

So thank you.

Great having you.

We've got more connections coming up in just a moment.

Oh.

Been.

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