Geralyn Arango (00:22):
Hello and welcome to Our Parallel Path, A Future For My Loved One With a Disability and For Me. My name is Dr. Geralyn Arango Deeley, and I'm your host for this podcast series about just what the title says, the parallel paths of family members, certainly parents, sometimes siblings as parents age or pass on, and then loved ones with intellectual disabilities. I am a parent myself, and I have some questions.

Geralyn Arango (00:51):
On Our Parallel Paths, we talk about creating a promising future for the quote, unquote, child with an intellectual disability who is now an adult and a promising future for ourselves as our role as parent, family member, caregiver evolves alongside them, because there's more than one path, more than one future to talk about. And that's why we're here. Some remarkable people share their stories on Our Parallel Paths. I'll be listening with you, and I may have some follow-up questions for our guests too.

Geralyn Arango (01:24):
Our guest today is Darcy Elks, who's going to be sharing on the emotions, the struggles, the exhaustion that's so often part of our parallel path. Darcy is a parent, she's an educator, she's an advocate whose work is about encouraging attitudes and structures that promotes social value and inclusion for people with disabilities and other people traditionally devalued and excluded. Darcy's work is about communities where all are welcome and free to use our gifts for the good of one another.

Geralyn Arango (01:57):
While I was at a conference several years back where I was telling one of the hosts about my own hopes and visions for my son and for creating an initiative at the college where I was working, and he said to me, "Oh, you have to meet Darcy." And so I did, and I'm so glad I did. Hi Darcy (laughs).

Darcy Elks (02:15):
Hi Gerry.

Geralyn Arango (02:16):
Hi. So tell us about, talk to us about your topic choice for today and, and why you chose it, 'cause it's an important one to acknowledge those emotions and struggles and exhaustion, but it sometimes really difficult to admit to ourselves and other people.

Darcy Elks (02:32):
Sure. I'd be happy to. I, and you gave me a list of things to look and, um, possible topics. And this topic really resonated with me, because right now we're going through a period as Mary is now an adult and thinking about her future. And she has ideas and dreams, and so it's been much on my mind what the future will hold for my daughter. And I find that, uh, you know, that brings some fear, brings anxiety. And so I think that's why this topic really, uh, spoke to me.

Geralyn Arango (03:08):
Mm-hmm.

Darcy Elks (03:09):
And when I was thinking about what to say in the podcast, I thought I'd just, you know, give an overall view of our, our vision and some of the hard times and what we've learned. So our vision as a family from the time Mary was, um, newly born is that Mary would have a very full life, that she would be fully included as a valued member of her community, whether that be the school (laughs) community, the work community, or the, our neighborhood and so forth. And she would be so included that she would be missed if she wasn't there-

Geralyn Arango (03:46):
Ooh, I like that.

Darcy Elks (03:48):
... missed if she wasn't there.

Geralyn Arango (03:49):
Yeah.

Darcy Elks (03:50):
So that has actually been the path that Mary has been on all through school and into adulthood, and we've had wonderful times. Amazing things have happened that have been so hopeful and so encouraging not only for our daughter but to see how our daughter's presence and involvement has really challenged people, opened up minds, even changed minds.

Geralyn Arango (04:18):
I love that.

Darcy Elks (04:18):
There, but there have also been, you know, some pretty hard times.

Geralyn Arango (04:22):
Mm-hmm.

Darcy Elks (04:22):
And as I was preparing for this, I was going through chronologically (laughs), starting with school and preschool was fabulous, very accepting and wonderful. First grade was a bit of challenge. The, the school wanted Mary to go, not to our neighborhood school, but to a different school to be in a special education class. But we convinced them that Mary needed to be in her neighborhood school where her brother and sister would be going to school and that, you know, she would bring a lot to the, to the school. So they did. They gave her a first grade teacher they thought would be perfect, ended up that the first grade teacher, although she was really nice, she'd been teaching for years. This was brand new to her, the idea of really including somebody with an intellectual disability in the classroom.

Darcy Elks (05:12):
And so, um, you can imagine how our hearts sank when we were allowed to visit and we walked into the classroom and they were having a reading circle and all of the children were sitting up front with the teacher, except for our daughter-

Geralyn Arango (05:28):
Aww.

Darcy Elks (05:28):
... was sitting in the back with the aid.

Geralyn Arango (05:31):
Mm-hmm.

Darcy Elks (05:31):
That was a pretty hard year and quite an introduction to the school system. However, second that third grade were actually, again, quite good, you know, depending upon the teacher. Fourth grade, it was really (laughs), really difficult. It was the year of total anxiety, and we just never knew what was going on. The teacher really, uh, you know, did not want Mary there. The principal wouldn't change the class. Anyway, I offered to Mary that year, I said, "Honey, would you like to stay home? We could home school, do school at home."

Geralyn Arango (06:08):
Okay.

Darcy Elks (06:08):
And she said, "No, going to school."

Geralyn Arango (06:12):
Okay, Mary (laughs).

Darcy Elks (06:13):
It was an amazing moment for me. And then, you know, things ... fifth grade was great, sixth grade was great. Middle school wasn't too bad, you know. Middle school's hard for everybody. Isn't it?

Geralyn Arango (06:25):
Mm-hmm.

Darcy Elks (06:25):
It was good for Mary (laughs).

Geralyn Arango (06:25):
Okay.

Darcy Elks (06:28):
Um, work, we worked well with the principal and the, and the teachers. And, and then Mary hit high school. And Mary went into high school with a number of friends, which was really exciting, and one best friend-

Geralyn Arango (06:40):
Mm-hmm.

Darcy Elks (06:40):
... that she found in middle school.

Geralyn Arango (06:42):
Okay.

Darcy Elks (06:42):
Grade nine was pretty hard, because when the, like, the school said they would include Mary, and they did, but it wasn't really full inclusion. So they still were sidelining her, trying to put her in, in special classes. This wonderful friendship that she had with, um, you know, her friend from middle school, they tried to make it into a relationship program (laughs).

Geralyn Arango (07:10):
A relationship program? Friendship (laughs).

Darcy Elks (07:15):
They wanted Mary and, and, uh, her friend to join this relationship program they had.

Geralyn Arango (07:22):
Uh-huh. Right.

Darcy Elks (07:23):
I'll never forget the day they called and they said, "Oh, we have to do a, um, we want to do a behavioral, functional analysis, uh, of your daughter's behavior in the hallways." I was thinking, "Wow, like, this isn't so unusual (laughs) what she's doing."

Geralyn Arango (07:37):
What she doing in the hallways (laughs)?

Darcy Elks (07:38):
Well, it turned out she was walking faster than her aid to loose her aid and-

Geralyn Arango (07:43):
(laughs) Go Mar- sorry.

Darcy Elks (07:46):
Like, she always-

Geralyn Arango (07:46):
I was gonna say go Mary, but no (laughs).

Darcy Elks (07:49):
She always (laughs) arrived to class and before her aid got there. So, uh, you know, uh, like, we talked commonsense with them, and they did understand. But-

Geralyn Arango (07:57):
Yeah.

Darcy Elks (07:58):
It was a challenging time. And really, things ... That whole year was really difficult. And my husband and I are pretty, uh, skilled in advocacy, but no matter what we did, we just couldn't seem to, you know, help them to understand or embrace the mindset of full inclusion. And I remember that year just feeling so down. It was really difficult. Every day that Mary went into school was kind of like fourth grade, you know. We just never knew what was going to happen. And I remember I was washing the dishes. I was getting weaker and weaker and lower and lower.

Geralyn Arango (08:37):
Uh-huh.

Darcy Elks (08:38):
I was washing the dishes one night, and as the water ... I pulled up the stopper, and the water, you know, was draining down the drain, I said, "That is what I feel like. I feel like (laughs) I'm just going down the drain emotionally." And it was a real moment for me. I haven't had many of these in my life.

Geralyn Arango (08:59):
Okay.

Darcy Elks (08:59):
And I said, "Am I going to just go down that drain, or am I going to stop that-

Geralyn Arango (09:06):
Mm-hmm.

Darcy Elks (09:07):
... "and take a different direction?" And at that moment, I thought, we are going back to the vision for Mary. We had always had a written vision.

Geralyn Arango (09:16):
Right.

Darcy Elks (09:17):
And I went back and I reread the vision, and part of the vision was that Mary would work. And at this point, she was 15. And so I said to myself, "We've tried to do everything we can. We don't, we can't change what's happening now in school, but we can focus on another area." And that's when Mary got her first job at a neighborhood DVD rental store-

Geralyn Arango (09:43):
There you go.

Darcy Elks (09:43):
... and got her first paycheck.

Geralyn Arango (09:45):
Nice.

Darcy Elks (09:46):
And we changed high schools, and school got a lot better. Mary ended up going to West Chester University as a non-matriculated student for four years. That was-

Geralyn Arango (09:57):
That's a story in itself, because it wasn't like there was an initiative there. You just kind of said, "Hey, Mary would like to go to college."

Darcy Elks (10:04):
We did (laughs).

Geralyn Arango (10:07):
(laughs). Guts.

Darcy Elks (10:08):
We were, we were so determined. And the, the school district ended up paying too, the, taking the money that they get until she turned 21 or through age 21.

Geralyn Arango (10:19):
Right.

Darcy Elks (10:19):
So they pay for, for tuition and books for, for three years.

Geralyn Arango (10:25):
All right.

Darcy Elks (10:26):
Um, and we were able to also get some funding where we could hire support, so we hired a grad student, a wonderful, social-

Geralyn Arango (10:33):
Perfect.

Darcy Elks (10:34):
... grad student-

Geralyn Arango (10:35):
Uh-huh (laughs).

Darcy Elks (10:36):
... who provided support. I will tell you that I was a little ... we were so excited about this, but that was also a type of (laughs), a little bit of anxiety and fear, you know.

Geralyn Arango (10:45):
Sure.

Darcy Elks (10:45):
But (laughs) I think of the time that Mary got lost while she was on the bus going to university.

Geralyn Arango (10:52):
Uh-huh.

Darcy Elks (10:53):
And she had a cell phone of course, and she called us but she was so anxious. She (laughs) dropped it on the floor, and then she ... of the bus. You could hear it clunk, and then we heard nothing from her (laughs).

Geralyn Arango (11:06):
Oh geez. Mind goes ... Where does the mind go then, you know? (laughs) Oh, oh my gosh.

Darcy Elks (11:12):
I didn't, you know, we didn't, we live in a, we live in a smaller place.

Geralyn Arango (11:16):
Mm-hmm..

Darcy Elks (11:16):
So it wasn't like in Philly or something, but I, I didn't know where she was for awhile.

Geralyn Arango (11:20):
Right. Yeah.

Darcy Elks (11:21):
And that, and, and it turned out-

Geralyn Arango (11:21):
Oh gosh.

Darcy Elks (11:21):
... it turned out (laughs) to be just fine.

Geralyn Arango (11:21):
(laughs)

Darcy Elks (11:21):
It was really-

Geralyn Arango (11:26):
Not at the moment.

Darcy Elks (11:27):
But at the moment (laughs) she was really ... it was really hard. Um, and there were other things of course with the university-

Geralyn Arango (11:37):
Mm-hmm.

Darcy Elks (11:37):
... that were quite a challenge to us. And, you know, she, she participated in all kinds of social activities and going out with friends at night. And, you know, so it was, it was good. It helped us grow. I would say-

Geralyn Arango (11:50):
Okay.

Darcy Elks (11:51):
... that period, we really grew a lot and learned a lot about our daughter. And then as an adult, you know, things have been pretty good. She's, she's, Mary has been working. There are just a few times that stick out in my mind. One was when she got very sick and had to be hospitalized, and she's a really healthy woman.

Geralyn Arango (12:09):
Hm.

Darcy Elks (12:09):
So that was, uh, that was really hard to see her in the hospital. Um, a good thing that happened is she went on vacation to Puerto Rico (laughs) with, yeah, with a couple of people. So that was (laughs), that was a big leap for us, but we were of course, were delighted.

Geralyn Arango (12:28):
Yeah.

Darcy Elks (12:28):
So I think all the way along the journey, good things have happened that have been wonderful that we really wanted for our daughter.

Geralyn Arango (12:36):
Mm-hmm.

Darcy Elks (12:36):
At the same time, we were like, "Is she gonna be okay?" (laughs)-

Geralyn Arango (12:40):
Yeah, yeah. But you, but, I mean, kudos to you for saying, you know, what, we're gonna ask that question, and we're not gonna stay no, say no. We're not gonna just like, "Oh, no, no, she couldn't possibly." It's like, "You know what? Maybe this won't work, but maybe it will." And you gave her that, that benefit of the doubt, that dignity of risk, you know. Kudos to you.

Darcy Elks (13:01):
Yeah. Well (laughs), well, thank you-

Geralyn Arango (13:04):
For the gray hairs on the head, we won't talk about that, but, you know-

Darcy Elks (13:06):
Yes (laughs). And I think my daughter can be forceful at times too. She was (laughs), she's pretty determined, I would say.

Geralyn Arango (13:12):
Uh-huh.

Darcy Elks (13:13):
She's a determined woman. So that helped us. Okay, I also think, now, right now, the future, thinking about the future trying to get everything written down, Mary's siblings have their own life right now. They're all brothers raising children and another one, another sibling is, you know, trying lots of things trying to figure out what to do in life. And, you know, we're getting older. And so we can't-

Geralyn Arango (13:42):
Care is not the only item on the menu. There's always this constellation of stuff going on, you know.

Darcy Elks (13:47):
Yeah.

Geralyn Arango (13:47):
Which is exhausting enough (laughs).

Darcy Elks (13:50):
And, and thinking more, and you're so right, Gerry, like, we're thinking about ourselves-

Geralyn Arango (13:54):
Mm-hmm.

Darcy Elks (13:54):
... in the future. And of course, thinking about when we are no longer here-

Geralyn Arango (14:00):
Mm-hmm.

Darcy Elks (14:01):
... the vulnerability of our daughter is really hard. We rejoice, we celebrate all the things that, you know, Mary is doing and has done. That still hovers over us, at least me.

Geralyn Arango (14:15):
Yeah.

Darcy Elks (14:15):
My husband doesn't talk about it much. I'm more out there-

Geralyn Arango (14:18):
He's only hovering (laughs).

Darcy Elks (14:20):
Yeah (laughs). Well, well, I'm, I'm, like, not hovering, but that it's just so ... what's hovering over me is, I was thinking about what happens when we are gone. That's always with me, and I believe that from the moment your child comes into your life, spoken or not, oftentimes it's unspoken. That's a fear we all live with as families.

Geralyn Arango (14:42):
Yeah.

Darcy Elks (14:42):
That happens when I'm no longer here.

Geralyn Arango (14:45):
Yeah.

Darcy Elks (14:45):
Okay. So I just ... I thought I'd share a few things that I've learned as a result of our-

Geralyn Arango (14:51):
Yeah.

Darcy Elks (14:51):
... journey so far.

Geralyn Arango (14:52):
Please.

Darcy Elks (14:53):
One is what you pointed out, calculated risk taking is good.

Geralyn Arango (14:58):
Yeah. I love the phrase, a ship is safe in the harbor, but that's not what ships are for.

Darcy Elks (15:04):
Yeah (laughs).

Geralyn Arango (15:05):
You know?

Darcy Elks (15:05):
It's, it's a great way to put it.

Geralyn Arango (15:07):
Isn't that great? Yeah. Because how, how, it could, it could work just as easily as it couldn't, you know. And if it doesn't work, we'll figure out the next steps, or you just kind of never let a person out of your sight and both of you suffer, you know. Anyway-

Darcy Elks (15:23):
Yeah.

Geralyn Arango (15:23):
Enough of me. Go on (laughs).

Darcy Elks (15:25):
It was, it was worth it. I, and I have to say with our other two kids, it was pretty much the same, you know. It was nerve-wracking -

Geralyn Arango (15:32):
Mm-hmm.

Darcy Elks (15:33):
... when they went out and did things. And boy, some, you know, they pushed (laughs) the norms a lot. So-

Geralyn Arango (15:40):
Yeah.

Darcy Elks (15:40):
So calculated risk taking I think has been good for us as well as for Mary. What has really worked, we've learned over the years, is doing, you know, really helping Mary have access to do what her peers do with appropriate-

Geralyn Arango (15:55):
Mm-hmm.

Darcy Elks (15:55):
... supports in the most natural way possible.

Geralyn Arango (15:58):
Mm-hmm.

Darcy Elks (15:59):
And that has been a guiding principle for us. And I think it's worked well. Mary's always been surrounded by lots of peers, and, that, that has been-

Geralyn Arango (16:10):
Mm-hmm.

Darcy Elks (16:11):
... has been really wonderful. And I think she's changed some people's thinking and opened their thinking up.

Geralyn Arango (16:17):
Just by being there in some way, you know.

Darcy Elks (16:18):
Yeah.

Geralyn Arango (16:20):
The fact that you are there as opposed to where people think you're supposed to be. It's like, no, why, why wouldn't you be here? You know, I think about Nick working at Lowes. And it's like, you know what, Lowes was open to a person who came with a job coach and all that, but he's, he's bringing something too, you know. There, he's, they're getting an employee, and he's getting an experience. So it's like, but he's here where he should be, a mile from his house where you can get a ride, you know, to work.

Darcy Elks (16:47):
Yeah.

Geralyn Arango (16:48):
... and a place where, you know, on every holiday, they barbecue for anybody who works the holiday, you know, like, just these typical, wonderful things.

Darcy Elks (16:56):
And a paycheck.

Geralyn Arango (16:57):
And a paycheck. Yeah.

Darcy Elks (16:59):
A paycheck, right? A paycheck.

Geralyn Arango (16:59):
Yeah. Yeah.

Darcy Elks (16:59):
Yeah, and-

Geralyn Arango (17:01):
And he likes to spend money, so (laughs)-

Darcy Elks (17:03):
Well, there's so much learning. I think that would be another great topic in and of itself, the learning of others.

Geralyn Arango (17:09):
Yeah.

Darcy Elks (17:09):
And Mary's now working in the theater, and she has mostly natural supports and it has been, I mean, it has just been wonderful.

Geralyn Arango (17:17):
Right.

Darcy Elks (17:17):
And I think, uh, they just never, people are really open (laughs) but it never occurred to them-

Geralyn Arango (17:24):
Mm-hmm. Mm-hmm.

Darcy Elks (17:24):
... like you're saying that-

Geralyn Arango (17:25):
Yeah.

Darcy Elks (17:25):
... someone with an intellectual disability would be, would be working-

Geralyn Arango (17:29):
What surprises me sometimes is that sometimes the people who have the most, you know, questions or doubts or, like, how could that be can evolve into a person who's a really good support. We've seen that happen too, you know,-

Darcy Elks (17:41):
Yeah.

Geralyn Arango (17:41):
... where this person was like, "What's going on here?" And then they're like, "Oh." And they had their little ah-ha moment, and you've got yourself a friend or an advocate or s- or a natural support.

Darcy Elks (17:51):
Yep, exactly.

Geralyn Arango (17:52):
But you've gotta be there (laughs). You've gotta be there.

Darcy Elks (17:54):
Al- also I think what I have learned is Mary is strong and resilient, and I need to remember that lesson. Mary has come through the tough times really better than I have. Mary's strong.

Geralyn Arango (18:12):
All right.

Darcy Elks (18:12):
She's resilient. And I'm coming to grips with, after all these years, the best laid plans (laughs).

Geralyn Arango (18:20):
(laughs)

Darcy Elks (18:20):
There still is no guarantee. Okay?

Geralyn Arango (18:22):
(laughs)

Darcy Elks (18:23):
But I don't stress as much over that anymore, because I have learned when I was reflecting in preparation for this conversation, things will be okay. They will be okay.

Geralyn Arango (18:36):
Yeah.

Darcy Elks (18:36):
But even when there's tough times, Mary can get through them.

Geralyn Arango (18:40):
Yeah.

Darcy Elks (18:41):
So-

Geralyn Arango (18:42):
And they may not look the same way that we thought it would look, but it's like, well, this okay works too.

Darcy Elks (18:47):
Yeah.

Geralyn Arango (18:48):
You know, just because my master plan didn't work doesn't mean that there isn't a good plan out there too.

Darcy Elks (18:54):
Right. And when I'm not here.

Geralyn Arango (18:56):
Hm. Mm-hmm.

Darcy Elks (18:57):
That's the big thing. I'm thinking about it also in relationship to that when I'm not here.

Geralyn Arango (19:02):
Mm-hmm.

Darcy Elks (19:02):
I have learned that my daughter's strong and resilient-

Geralyn Arango (19:05):
Mm-hmm.

Darcy Elks (19:06):
... things will be okay. She will, she will manage it in her way of managing-

Geralyn Arango (19:12):
Okay. Okay.

Darcy Elks (19:12):
... the hard times. And so that, uh, has been really helpful to keep remembering and reflecting on her journey and-

Geralyn Arango (19:21):
Do you journal at all or write anything down? I started doing that a little bit.

Darcy Elks (19:26):
You know, I've tried that several times. I'm not too good at it (laughs).

Geralyn Arango (19:32):
(laughs) Well, this one isn't going to be some beautiful paper notebook full of stuff that would be a ha- something to hand down. Mine's a Google Doc. There's nothing flowy about it, but it's like, it helps me when I look back. It's like, "Oh, oh." And it's a couple sentences. But I just always wonder if people, like, keep any type of journal. I'm a journaly girl.

Darcy Elks (19:53):
I think it's a great idea. I think it's a great idea. So I guess for me, I think part of this is you talking about our parallel visions. A lot of our vision, honestly my husband and I has, have been raising our children for ourselves. That's, that's pretty much what I think happens when you have (laughs) kids, right?

Geralyn Arango (20:14):
Mm-hmm. Mm-hmm.

Darcy Elks (20:14):
We're raising our kids, and then now we have grandchildren, which is also really exciting.

Geralyn Arango (20:21):
Mm-hmm.

Darcy Elks (20:22):
So our vision for ourselves, it, you know, we're really thinking about the future and we're not-

Geralyn Arango (20:27):
Okay.

Darcy Elks (20:27):
... doing it for ourselves either. But clearly our, through the child raising part (laughs) of our-

Geralyn Arango (20:33):
Uh-huh, okay.

Darcy Elks (20:34):
... we can just enjoy the grandchildren.

Geralyn Arango (20:36):
Yep.

Darcy Elks (20:36):
And we, just as Mary is really thinking about, you know, moving, she's wanted to move into her own place. This is hard to achieve, but we've continued to work on it. It's the same thing for us. Are we going to move? So our parallel visions, they've kind of now come together (laughs) in terms of-

Geralyn Arango (20:55):
Okay.

Darcy Elks (20:56):
... where we are in our life.

Geralyn Arango (20:57):
Mm-hmm.

Darcy Elks (20:57):
And there will be, you know, probably some pretty big changes coming. And I guess the other thing I know you, you do ask is, what do we do, what do ... you've asked all the other folks-

Geralyn Arango (21:09):
Yeah (laughs).

Darcy Elks (21:09):
... "what do you do to take care of yourselves?" So I did-

Geralyn Arango (21:11):
Yeah, because that's what I was gonna ask you anyway (laughs).

Darcy Elks (21:15):
(laughs) One is to remember what I shared, you know, the different lessons I've learned. I try to keep remember those. I do have those written down, Gerry.

Geralyn Arango (21:24):
Oh.

Darcy Elks (21:24):
I, I try to remember those lessons, because they're, they're encouraging to me. Uh, being in contact with other people is really important for me. Really other families-

Geralyn Arango (21:38):
Yes, I agree.

Darcy Elks (21:40):
I just have learned so much from the beginning of Mary's journey.

Geralyn Arango (21:44):
Hm.

Darcy Elks (21:45):
I have learned so much from families and have gotten so much encouragement, and then other people. So I have friends who, you know, don't have family members with disabilities. And I ... they're very close and, and I'm sure everybody does and they've gotten pulled in and they're (laughs)-

Geralyn Arango (22:04):
Uh-huh.

Darcy Elks (22:05):
... they're a part of the people in my life who I know who to go to when I'm (laughs), when I'm feeling [inaudible 00:22:13]. To be-

Geralyn Arango (22:14):
You've got a little tribe going, your little community of, of people with, like, your typical support.

Darcy Elks (22:19):
Yeah. I, I, it's vital for me.

Geralyn Arango (22:23):
Yeah.

Darcy Elks (22:23):
And then lastly, I, this occurred to me as I was thinking about this podcast to take of myself. I think I really, especially now, need to just relax and enjoy my daughter. I'm always thinking about the future, getting everything set for the future, you know.

Geralyn Arango (22:38):
Almost like this lovely human being that you're fond of kind of thing (laughs)?

Darcy Elks (22:42):
I know. We, Mary and I, the other day, we went out to lunch. She said, "Mom, I'll buy you lunch." And we went out and we had such a good time. I thought, "She's such a wonderful woman." And I, I, I know I think that, but I sometimes overlook it in this effort to kind of arrange everything, you know-

Geralyn Arango (23:00):
Mm-hmm.

Darcy Elks (23:01):
... for, for after I'm not here. And so I-

Geralyn Arango (23:04):
I like my daughter (laughs).

Darcy Elks (23:07):
Yeah, it, it ... Well, it occurred to me, sometimes I feel like, because I'm so concerned about what happens-

Geralyn Arango (23:12):
Mm-hmm.

Darcy Elks (23:12):
... after we die, that I'm making her into a project.

Geralyn Arango (23:17):
Uh-huh.

Darcy Elks (23:18):
I have to do this, I have to do this. And we have to do this, and then I have to do this. And I know I have to write more things down, and I know, uh, which is good, that's all good to be doing-

Geralyn Arango (23:26):
Mm-hmm.

Darcy Elks (23:27):
... but she's not a project (laughs), and I wanna spend time just enjoying her.

Geralyn Arango (23:31):
That's really, that sounds, you know, like, trivialized, that, that's huge, because I think there's some truth to that. It's like, you know, this is my, my son or daughter incorporated, you know, that I have to micromanage all these things. And it's like, oh, I forgot, I, I rather like my child (laughs), you know, and that I enjoy their sense of humor and I enjoy the moments that we have together that we do something that we like to do. That's, it's real, because, you know, even when I, I think our, our kids, any kid, gets to that point of parent does like, "Please get away from me," that does evolve back to, "I enjoy being with you, mom, dad, whatever." So that's natural (laughs). And we kind of forget because we have so much kind of this other layer of stuff that we have to think about, you know.

Darcy Elks (24:16):
Mm-hmm. Mm-hmm.

Geralyn Arango (24:17):
But it's, but not to lose sight of that (laughs), thank you.

Darcy Elks (24:20):
(laughs)

Geralyn Arango (24:25):
(laughs) So I mean, you pretty much ticked off so many of the boxes that I would be asking you, because I really was thinking, "What, what else brings you strength as you go along as, on the, on the path?"

Darcy Elks (24:37):
Well, I have to say, um, I do believe in God, and I, that is a bedrock of my life-

Geralyn Arango (24:47):
Mm-hmm. Mm-hmm.

Darcy Elks (24:47):
... um, faith. And so I have to say that, that relationship with God really has, you know, given me strength all, all the way, all the way along.

Geralyn Arango (24:58):
Yeah.

Darcy Elks (24:59):
So ... yeah.

Geralyn Arango (25:00):
Yeah.

Darcy Elks (25:01):
That gives me-

Geralyn Arango (25:03):
And something that you share with your children as well, however they choose to incorporate it is something that we give our kids, if that's something that we choose to give our kids. I know I do. Is there anything that you wish you had known before all of this?

Darcy Elks (25:17):
Well, there are always things that you wish you, you knew. It's hard for me to identify. I was very fortunate. Mary came into our lives when I was a little bit older, like established in a career. I'd had an opportunity to learn from some amazing teachers, uh, Dr. Wolfensberger and, you know, Bicklen, and these are people who, who-

Geralyn Arango (25:42):
I love the names.

Darcy Elks (25:44):
... very influential a number of years ago. I'm sure I could think of something, but off the top of my head, I'm, I'm not sure. Like, I, I will tell you one thing, when I, when Mary was 18 months old and I was doing some work in Canada, that's where I learned about inclusive post-secondary education. They had started inclusive post-secondary educations. And I met kids who were going to college and university and their parents and I was actually asked to do an evaluation of the very first initiative-

Geralyn Arango (26:19):
Wow.

Darcy Elks (26:20):
... in Canada.

Geralyn Arango (26:21):
Hm.

Darcy Elks (26:22):
That opportunity, I feel like I've been so blessed all the way along, I, that stuck with me for the rest of my life. Hearing those (laughs) meeting those kids, you know, and really getting a look at the possibilities, I mean, that was focused on college and university-

Geralyn Arango (26:41):
Mm-hmm.

Darcy Elks (26:42):
... but for me, it expanded my thinking so much of the many possibilities that would be available.

Geralyn Arango (26:49):
The possibilities. You know, like, I mean, I got that from very early on, we use to go to the early intervention conferences. And we'd hear people talk about vision, and we'd hear people talk about things that were, you know, he's two. That's him over there. He's two, you know.

Darcy Elks (27:03):
(laughs)

Geralyn Arango (27:03):
And I'm ... this is what I'm thinking about. But it was, it was really good to get started thinking about this stuff early. And I always kind of think about and, and wonder about and worry a little bit about the persons who didn't get those early messages and what messages did they get, are they getting. And, you know, I'm hoping that this podcast can catch people as they are in, entering into this phase and saying, "Well, you know what? Dream big, you know, collaborate, share, learn, and it's never too late, you know, to, just to create a vision that's big." And so are there any, uh, resources that you would say, "Hey, you should check out this or read that," or any names that you would say, "Hey, this was a person whose work you might, uh, a listen or might wanna look up or read about."?

Darcy Elks (27:55):
Um, I, I do think that reading, knowing Dr. Wolfensberger's ideas about social rule and organization were very, very helpful. And indeed in Pennsylvania, his ideas were influential and coming everyday lives, uh, concept-

Geralyn Arango (28:12):
Mm-hmm.

Darcy Elks (28:13):
... years ago. So there is a website, it's WolfWolfensberger.com-

Geralyn Arango (28:19):
.com.

Darcy Elks (28:19):
... that, uh-

Geralyn Arango (28:20):
Mm-hmm.

Darcy Elks (28:20):
... yeah, that I would, I would recommend. I think for anybody who's thinking about transition to just learn a little bit about inclusive post-secondary education, you can go to thinkcollege.net.

Geralyn Arango (28:35):
Mm-hmm.

Darcy Elks (28:35):
And we also have a website here in Pennsylvania, Pennsylvania Inclusive Higher Education Consortium-

Geralyn Arango (28:42):
Mm-hmm.

Darcy Elks (28:43):
... would be-

Geralyn Arango (28:43):
PIHEC.

Darcy Elks (28:43):
PIHEC, yeah. Uh, those are some places that you could, you could look. I think the Pennsylvania Family Advisory Network is another place to take a look.

Geralyn Arango (28:53):
Mm-hmm.

Darcy Elks (28:54):
Uh, they can, you know, help you with planning and, you know, vision. And there are a number of workshops there that are offered online. This is all online work now, so that-

Geralyn Arango (29:06):
Mm-hmm.

Darcy Elks (29:06):
... are quite accessible and interesting topics like healthy relationships-

Geralyn Arango (29:11):
Mm-hmm. Cool.

Darcy Elks (29:12):
... and information about waiver, what it is and-

Geralyn Arango (29:15):
Mm-hmm.

Darcy Elks (29:16):
... what are the possibilities with it. Information on using the life course tools to plan, which are very practical person centered planning-

Geralyn Arango (29:24):
Mm-hmm.

Darcy Elks (29:24):
... tons of tools.

Geralyn Arango (29:26):
I think those tools can be used for anyone. I mean, if, I could sit down and write them for myself as a way of saying, "You know what? How do I keep going? You know, who am I in all of this?" So yeah, that's, those are at least, first of all, aesthetically very pretty tools that are really yummy for, you know, working with your loved one or, and even with yourself just to kind of get yourself kind of acclimated to, "What, you know ... Where am I in this? Because if I'm strong, I can help someone else be strong. But I have to be strong," you know.

Darcy Elks (29:59):
That's a really good point. That's what I like about Life Course. It's really ... It's manageable. It's a nice format, um, and it's for all.

Geralyn Arango (30:08):
For all. Yeah.

Darcy Elks (30:09):
Everybody can, can use it, you know.

Geralyn Arango (30:12):
Yeah.

Darcy Elks (30:12):
So, um, I, I mean, I know people who've used it for retirement. I used it as well to problem solve some things that, you know-

Geralyn Arango (30:20):
Mm-hmm.

Darcy Elks (30:20):
... we were, some issues that we were experiencing. So I agree with you.

Geralyn Arango (30:24):
Yeah. So because we, we do have to put, keep ourselves on the list. It's not selfish, you know. In some ways, it's almost a little selfless and it's ... to, to be able to say, "Look, if I'm ... I gotta be ... I gotta stay strong."

Darcy Elks (30:36):
Mm-hmm.

Geralyn Arango (30:36):
And so I wish you that. I wish myself that. What's next for you and Mary? Any summer plans? Any, anything going on?

Darcy Elks (30:44):
Well, Mary loves to go out and do things without me.

Geralyn Arango (30:49):
(laughs) There you go.

Darcy Elks (30:50):
(laughs)

Geralyn Arango (30:51):
Because that's how it goes (laughs).

Darcy Elks (30:54):
So we, we ... Mary does have a support worker who she was very involved in the, the making the ad and doing the interviewing and hiring. And they have very similar interests, so they go to-

Geralyn Arango (31:08):
Oh.

Darcy Elks (31:08):
... you know, concerts and plays and drag shows and, like (laughs) ... They're into the arts.

Geralyn Arango (31:16):
(laughs) I guess.

Darcy Elks (31:16):
Let me just say that. A wide-

Geralyn Arango (31:18):
That's-

Darcy Elks (31:18):
... a wide variety of-

Geralyn Arango (31:19):
Mm-hmm.

Darcy Elks (31:19):
... arts.

Geralyn Arango (31:19):
Oh.

Darcy Elks (31:20):
And I think every year, Mary goes to the beach for vacation with some friends and, uh-

Geralyn Arango (31:27):
Ooh.

Darcy Elks (31:27):
... her support worker goes as well, the, like, mutual friends that they have.

Geralyn Arango (31:31):
Nice.

Darcy Elks (31:32):
And they'll ... I know she's looking forward to that. For me, this summer, I'm not quite sure yet (laughs). Pick your seat, there you go (laughs).

Geralyn Arango (31:41):
Yeah. That's, that's, that's what I'm finding is where we all kind of go, "Oh, me? Right, right, me, right."

Darcy Elks (31:49):
(laughs)

Geralyn Arango (31:49):
And that's, I think that's part of my little podcast mission is, like, yeah, it, we're so accustomed to thinking that, that it's, it would be kind of s- how, how, how could I put myself, even as a parent at all, like, "This is what matters and, and I'm, I'm over here." It's like, "Well no, no. Not quite." But it's, then it's not selfish (laughs). So it's just hard (laughs).

Darcy Elks (32:09):
(laughs)

Geralyn Arango (32:11):
But I'm so glad that you stopped by. And thank you. Is there anything else that I forgot that you'd like to add as we close?

Darcy Elks (32:20):
I don't think so.

Geralyn Arango (32:20):
Okay.

Darcy Elks (32:20):
It's been a pleasure to be here. And thank you for doing this podcast. I think it's just a really helpful podcast. I listened to the previous ones you've done and really enjoyed them, so-

Geralyn Arango (32:32):
Oh great. Great.

Darcy Elks (32:32):
... thank you-

Geralyn Arango (32:33):
Thank you. Thank you, Darcy, for taking time to share your story. And it's good to see you, really good to see you, even if it's just on Zoom. And the listeners too, thank you for joining me on Our Parallel Paths today. I hope you will take a moment to rate the podcast, to subscribe to the podcast. And I really hope that you'll return to listen and learn for more stories of people like you and me and our loved one with a disability on Our Parallel Paths. So we'll see you next time.