Gerry Arango (00:22):
Hello, and welcome to Our Parallel Paths: A Future for My Loved One with a Disability... and for Me. My name is Dr. Geralyn Arango-Deely, Gerry. 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 their loved ones with intellectual disabilities. I'm a parent myself, and I have a lot of questions.

Gerry Arango (00:54):
On Our Parallel Paths, we talk about creating a promising future with a child with a disability who has become an adult, and a promising future for ourselves as our role as parent, family member, caregiver evolves alongside them. There's more than one path, more than one future to talk about, and that's why we are here. Some remarkable people will share their stories and upcoming episodes. And I'll be listening with you because I have some questions for our guests, too.

Gerry Arango (01:25):
I'm so happy to introduce today's guest, my friend and colleague, Diane Perry. Diane is a mom to Zara and David, a parent resource specialist for The PEAL Center here in Pennsylvania, and is active in several organizations advocating for a better life for people with disabilities. Our sons David and Nick both have Down syndrome, big personalities. And both have a good bit of support for the visions they have for their lives. Diane is going to talk about having a vision for David and a vision for herself. So welcome, Diane.

Diane Perry (02:03):
Thank you, Gerry. I'm happy to be here today. And thank you for asking me to be a part of this podcast and sharing my story as well as David's. And with his big personality, he does give me permission to talk about him, so I'm happy to be able to do that today with you.

Gerry Arango (02:20):
Great. What even made you choose this topic as a whole from my big long list?

Diane Perry (02:26):
Yeah, yeah. And it was a long list. And as I was looking through it, I'm like, "Yeah, I might be able to do that one or that one." But I've always gravitated to things around person-centered planning or those tools about building a vision and a path. And I think that I really gravitated to that because what that does for me is it gives me hope. It gives me a clear idea of the possibilities for David. And I have to say, very early on when he was first born, I used to go to a lot of conferences and workshops. And while I did have a positive attitude about David's outlook, there were still a lot of unknowns, a lot of fear of, "When he gets older, is he going to be able to do this? Is he going to do that," those kinds of fears you have for any child. I had them for Sarah as well.

Diane Perry (03:24):
But for David, it was a little bit more because he did have a disability. And what was society going to do around accepting him, and so forth? So it was very - I was very motivated to make sure that David did have a good life. Out of those conferences and workshops, I saw people's lives, people with more complex needs than David had. And there they were, having good jobs, getting a good pay. They were out in the community. They were out having parties. They were people getting married, all these wonderful things that I was thinking that, "Well, David has Down syndrome. Is he going to be able to experience any of that?" I mean, I did have some doubts, like, "What's that life really going to look like for him? Is someone really going to be able to fall in love with him? Is he going to fall in love with someone else," - all those things you want for your children when they're very young, because I myself had those experiences, and I want my children to have those experiences.

Diane Perry (04:24):
So, I think that really laid the groundwork for me in thinking about David's future and what that could look like. So I think without any of these tools, I think in my head, I already was building and thinking about what that vision was going to be. And then I was so blessed to have so many wonderful people just pop into my life to help me and guide me with that vision, you being one of them, as well as some other wonderful people, like our good friend, Trish Kregan. I mean, I remember meeting her and she, I will say, was the one who really got me started on my first person-centered tool, to actually use a tool when David was transitioning from middle school to high school.

Diane Perry (05:16):
And I was just learning about these tools that you can use, and what's person-centered planning mean? And not many people knew about this. The school people, they had no idea what I was talking about. I would bring a vision, like I would write a vision for David and bring that to his educational meetings, his IEP meetings, but they didn't really know-

Gerry Arango (05:37):
People didn't expect it, did they?

Diane Perry (05:37):
No, no. They embraced it, though. I will say-

Gerry Arango (05:45):
Good.

Diane Perry (05:46):
... the district really embraced me bringing a vision. And I always brought it to his annual meeting. And every year, I would edit it. And I always knew that I hit all the good points when I would read it to my husband or if he read it, and if he cried, I knew I did a good job.

Gerry Arango (06:08):
Got him all misty.

Diane Perry (06:09):
Yeah, I sure did. I sure did, because we had the same hopes and dreams for David. So all right, I got what we both want for David. And so I always found that funny. I like sharing that I got him like misty eyed. I like that.

Gerry Arango (06:26):
For those of you that don't know her husband, that doesn't seem like a misty eyed, easy to get misty eyed person.

Diane Perry (06:30):
No, he's not.

Gerry Arango (06:33):
But when it's our kids, they hit all the buttons.

Diane Perry (06:40):
Yes, they do. Yes, they do. Yeah. So I would share that vision at every IEP meeting. And of course, depending on what kind of mood I was in, sometimes I would read it for everybody, or I passed it around and had everybody else read. If I was too emotional, because I can get very emotional, as you know ... I remember going to different meetings and stuff for local Down syndrome group meetings and stuff, and people would look over and say, "Oh, I hear Diane crying again." That was something I always did. I was known for that, but that's okay. I don't mind. I don't mind that.

Gerry Arango (07:19):
Well, Diane, what was in the vision statement? What kinds of things that were you including about David that created that vision? What was in it, if somebody were looking at that paragraph or whatever, in order to write one of their own?

Diane Perry (07:36):
I always started his vision statement, the first line always said, "David will be a tax-paying citizen." I always felt that was very important for people to know, that he will be a tax-paying citizen. Because when you think about that, a tax-paying citizen, that means that he's going to be getting a job and competitive employment, right? He may need to go to college and get a career for it as well. So there's all these things, all these high expectations you have to have for a person, if they're going to be a tax-paying citizen. So I always started off his first sentence that way.

Diane Perry (08:15):
And then I would always put things in about what his likes and dislikes were, just because they changed from year to year, right? So with them changing from year to year, I want to make sure that ... And his staff, right? You get different teachers all the time, so they're changing every year too. So I really had to tailor it to the now and what was happening. But I always did focus on and was always very appreciative of the past as well. So I would talk about some of the wonderful accomplishments he made, but also would put in a couple of those needs because, yes, we work on those positives and build on those positives, but we also need to know what are his needs, so that we can better support him to get to that goal of being a tax-paying citizen.

Gerry Arango (09:02):
You want to try and get the whole picture in that vision of who he is

Diane Perry (09:06):
Exactly, exactly. And then as he got older, he took over the vision. So I'm there, we're there as his parents to help and guide him, but then there is a certain point where we've been helping him to self-advocate for himself, for him to have his own hopes and dreams, and then for him to take over. And he would take over. He took over right about high school-ish, because then he took over his meetings. He did a PowerPoint, and he basically showed his vision through the PowerPoint to the school team. So that's where the vision continued, but it was through the eyes of David Perry and not Diane, or his parents. I mean, we maybe helped a little bit, but he really began to take ownership of that.

Diane Perry (09:52):
And it was those other tools we used too, like the map that I mentioned, and the PATH. The PATH is another person-centered tool that we did several of those. And that was a great experience, not just for us as a family and his support people, but for David too. With that big personality that you talked about, he loved being the center of attention. He loved having to talk about himself and what his dreams are and who's going to help him, and all these things to build up his social network, which was very important to us. We, as his parents, know that we may not be on this good earth for him for the rest of his life. So it was very important to us to make sure he builds that social network around him.

Diane Perry (10:37):
One of the conferences I went to, I remember them sharing, like when they left high school, they fell off this cliff. And they were talking about how their young adult was lonely and depressed, and I mean, all these very bleak things. And I said to myself, "I do not want that for David. I can't let that happen." So all through school, even before he left, I was always building those relationships and those friendships and trying to figure out, how can we bring more people into his life, so that hopefully when he left school, he wouldn't be depressed and all that? And I must say, I don't think he ever was. He was definitely kept busy. People knew he needed to be busy. And even when he left high school, he continued on with what he wanted to do for his future, through that guidance of all of these person-centered planning tools. So it was really a wonderful experience for us.

Gerry Arango (11:33):
Okay. Now I'm wondering, I'm going to circle back to you, because the purpose of this podcast is to talk about that parallel path that you are on with David, which isn't just about David. So I'm curious as to how the idea of vision, how David's existence changed your vision or whatever it did with or for your vision. I'm curious about you, from soup to nuts, with regard to how the PATH piece - the vision piece and the PATH piece have been part of your personal vision and path.

Diane Perry (12:15):
Yeah. And when I saw that too, that it had a focus on me, I was like, "Oh yeah, [inaudible 00:12:21] look at myself, and how have I used those tools or not to help me, first of all, be strong for the family, and number two, for myself?" And I'll be very honest, I don't know that I really looked at those pieces for me until maybe the last five to 10 years. I will have to say that for me, those younger years and all that in the beginning, I just ran, ran, ran, ran, ran, ran, ran. I don't know that I really used those tools for me or looked at those tools for me, and, "What am I doing to take care of myself," until, like I said, maybe five or 10 years ago. And when I finally came to that realization, taking care of myself and having my own vision of what I wanted to do for myself ... And part of that was to be a healthy person.

Diane Perry (13:18):
I don't necessarily know I was taking care of myself in a very good way, health-wise. And I needed to start really thinking about, what does life look for me in a couple years? I'm getting older, right? When I was getting older, I'm thinking, "Oh, I am getting older now. I guess I have to start growing up," kind of thing. Even though I was an adult, I don't necessarily know I was thinking in my head that I was an adult. So I had to do a mind shift there. And knowing these tools really helped me reflect on that, of where I want to go, and what does life look like for Diane? And I don't always like doing that. I don't always like looking at myself, but when I do, I do feel much better. I feel better in all three ways: my body, mind and my soul. It's a whole change for me.

Diane Perry (14:20):
I've always said, not only did David ... I'm very grateful David gave me my career and the work that I do, but I also feel that he has also shaped me into who I am today, and my day-to-day acceptance of all people, because there are so many different changes in our lives that have happened that having that foundation of David and his experiences has helped me and shaped me into the person that I am, of like you said earlier, fighting for that inclusion for all people with disabilities, no matter what they bring to the table. And I always love talking to a parent who sometimes has, "Well, my child can't do this, or they're never going to do this." And I always love changing that negative to a positive because, "No, you could always do this. You could always have some type of" ... And you know what? If they don't reach it, the path to that, the little steps that you take towards that, is success, is good things happening.

Gerry Arango (15:28):
The joy is in the journey? One of my favorites.

Diane Perry (15:31):
Exactly, exactly. Yeah. And there's some pitfalls. I'm not going to lie. I mean, yeah, there's some pitfalls that go down. We meet certain people in our lives, or David has an experience that isn't very positive. It hits you in the stomach. But I call my good friends like Gerry and other people, and we talk about it, maybe cry about it. And then we move on and figure out how to go on. And that's what we do. The friends and the social network I've been able to build around me that I didn't even realize I was building around me is all through David and all the work that I've been doing around the PATH and the visions and just my work in general. So I think that has really helped me shape from my vision as well as the people around me, if that makes sense.

Gerry Arango (16:17):
Okay, okay. It does make sense. It does make sense, because it does open up a whole group of people that you wouldn't maybe have met, who are sharing something a little beyond the general parenting experience, and who I always think ... There are people I have to say, "Once upon a time," every time I talk to them, and I have to start fresh. But there are other people like yourself who I could go, "And then this happened." They already know your story and you don't have to go back and explain it to them, because they're going through it a little bit too. And that's a special group of people in my life. And I think you're one of them. So thank you for being on my journey on my path, too.

Diane Perry (17:04):
Yeah, absolutely. Yes. It's wonderful to be on that path with you, Gerry. Yes, definitely.

Gerry Arango (17:10):
Yeah, thanks. So Diane, I have a couple of questions. And take a moment to think about these. But the first one is ... and I sort of heard some of this in your answers, but if you want to elaborate, what did you do or think about to get yourself emotionally prepared to support David into adulthood? And when did you start thinking about it? I think you said you started thinking about it very early on. But what did you do to get yourself ready for this, think of transition and all that?

Diane Perry (17:46):
Yeah. So I would say there's probably a couple things while David was going through those transitions. Transition was huge. When he was 14 and all those systems you got to deal with, all the paperwork you got to go through, and all of those things can be very overwhelming, as you know. And I think it will go back to the people that I've been able to surround myself with and network with. I have been graced with a talent of networking and working with people and pulling them in. People used to say, "If I asked you to do something, they would do it, because Diane Perry asked them." And I'd be like, "What do they mean by that?" But I develop a good relationship with them that they knew that, "Diane's asking, it must be something she ... and we're going to do it."

Diane Perry (18:44):
And I'm so graced to have that. I'm so grateful that people would get back to me or help me, or connect me to where I needed to go. So I'm really grateful I was able to build those relationships with people. And it was all about those relationships. And I think that was key to helping me get through and prepare for that, is those relationships. And the relationships were very important to David as well. So through his eyes, I've been able to develop that with myself. But transition, I educated myself a lot. I went to conferences, workshops. I connected to whatever was out there. I was there. And the other funny thing is that people will say, "Oh, do you know Diane Perry?"

Diane Perry (19:37):
"Oh yeah, I know her." People knew me because I was always there. I was always putting myself out there. I was always in those conferences and workshops, raising my hand, asking questions. I was not shy. I always have a question. And that opens up, again, those relationships. And it helped me understand better what I need to do and what I needed to do to prepare for that, paperwork-wise and emotionally, too. I would lean on my husband a lot, too. We certainly supported each other through all of that as well.

Diane Perry (20:11):
So I have a wonderful mother and sister that also were there for a lot of different things. They didn't maybe always understand the journey, but I was able to connect also with all those parents who have been there and done it you. You and I have many of the same friends that we walked those same paths with. And they've been there and done it. And I'm going to pull on their knowledge, the family members who had the older children, their knowledge and the barriers they broke down and the experience that they had. I want to learn from that so that I can do better for David and be prepared.

Gerry Arango (20:50):
Yeah, I hear you. I hear you. So I'm wondering, is there anything, what do you wish maybe that you had known before you started this journey? Because I'm thinking about our listeners and what they can learn from you, what things maybe that they could not have to go through. What do you wish that you'd known when this started?

Diane Perry (21:09):
Yeah, that's a really good question. And it might be a little hard for me to answer because I do feel like I was blessed with a lot of good people that just showed me the way. And I wasn't shy about asking questions. I will say that my approach to certain experiences might not have been the best. So maybe if there was something I would've liked to learn was that ... because I made mistakes because of my approaches to certain things or my assertiveness and maybe in a not so good way sometimes. So I would maybe reflect back on some of that early on, where it was more of, "You need to do this," as opposed to, "Let's talk about this and see what we can do together." So I think that is something that I've had to refine.

Diane Perry (22:05):
But if I had that refinement early on, I don't know, maybe that would've been a little bit better too, but I do believe that ... I'm a faithful person. So I feel like things are given to me at the times where I feel I need to know them, and those experiences and when they're going to happen to me. So I feel that should I could have known something? I'm not so sure there would've been, because that would not have been the correct path for me then, maybe. I don't know. I don't know if that answered your question or not, but that's the best I could think of.

Gerry Arango (22:37):
Well, I was going to elaborate on that question with two things. One, to tell us about a time where you feel like, "Oops." You did an oops or, "I kind of messed that one up," and how you handled it. And then something that you're most proud of as well. So if you would go to the dark place, and then come back into the happy [laughter] -

Diane Perry (23:02):
Oh yes, yes, yes. There were a couple experiences, I think, with David in school that might have been some dark places that I might not have handled so well. I'm trying to think of a real specific example. And I will say that one's not jumping right out at me, other than I sometimes was not very proud of the way I handled myself at some of the school meetings. I didn't want to listen. I didn't want to hear their side. And I was right, and they were wrong. That was just it; I was right and they were wrong. "You're messing with my son, and this is the situation. And I'm going to back him up," kind of thing. So, I'm not real proud of some of those moments of not being a little bit more of a better listener maybe, and handling those a little bit better.

Diane Perry (24:04):
Yeah. I mean, other than those experiences, particularly with David, they were probably the darker times. And I guess what got me out of them is, I hate to go back to it, but it's that circle of support that I had built up around me, people that I connected with in so many different ways. I do remember a really good ... and you know her as well, Colleen Tomco. She was like my ... I would come home from school sometimes from a school meeting, and I would be on fire. And I was going ranting and raving. And she was my go-to person I'd call. And I was able to just let it all out, everything I had to say. And she would say, "All right, I hear you." She'd agree with me and everything. And then say, "Okay, so you know you can't go back there and you know you can't say things like this, so what are we going to do? How are we going to change this around? What are we going to" ...

Diane Perry (25:03):
And I'm like, "I don't want to. I don't want to work with them," or whatever. And she talked me down off that ladder, and she would help me through and figure it out. And I remember calling her on a couple occasions for those types of things. So yeah, there were some dark times there too, but some tears came with that anger too.

Gerry Arango (25:24):
Sure. Don't mess with my baby.

Diane Perry (25:27):
That's it. You got it.

Gerry Arango (25:31):
Absolutely. Yeah. And sometimes it's a skill that you're going to, I think, have bad years with, bad teams with and better teams with, but we still have to say, "All right, how do I handle the not so hot teams and the more collaborative teams," because part of me does believe that people mean well, even if they're way off, in my opinion, that some part of them is ... they do mean well. Can I work with any piece of this? And I can't always say that I feel it all the way through. But yeah, I think it's a skill that you develop because you realize, "I shouldn't have ... maybe I went too far that time." And you try it differently next time, and you forgive yourself and you try to learn from what you wish you hadn't done or wish you had done. And you keep going, because there's another meeting coming halfway through the year or whatever, or an annual, or a re-eval.

Diane Perry (26:30):
That's right, that right. Yeah, yeah.

Gerry Arango (26:33):
So something you're proud of?

Diane Perry (26:35):
And you asked about a good thing, right? ... proud of?

Gerry Arango (26:35):
Yeah, yeah. Something you're proud of.

Diane Perry (26:37):
Yeah. Yeah, yeah. Yeah. So I think one of the biggest things that I think I'm proud of is graduation day for David, I will say. That was just ... even though I know David had so much to do; he built his own circle. He developed those relationships. He did all that wonderful education and all that. But I also know, and I'm not blind to, I kind of helped that along. I helped making sure that he was included, making sure he wasn't going into the whole of the life skills all the time, kind of thing. No, he still needs his academics. All those things, I pushed for. And David wanted too; it wasn't just mom pushing.

Diane Perry (27:22):
So graduation day was just incredible because David also was on the football team and he also became one of the football coaches for several years. After he decided it was too hard for him to play, he wanted to be one of the coaches. So graduation day, I had known David would go to the pep rallies, and they would have pep rallies in the school. But I didn't realize that he was one of the people that got them started with the cheer that they do at pep rallies. So on graduation day, when they called David's name ... First of all, to go up on that stage, the place erupted. I was just in tears. Of course, I'm getting a little choked up now already, just thinking about that moment. And it's such a proud moment. And it was humongous, but to just know that ...

Diane Perry (28:15):
And what I was feeling was, "Here's the community. This is the community that knew David, that knows David, that will remember David." And they had it all planned that he would do one last Bucks cheer for everybody at graduation. Now mind you, things like that don't happen. The principal's like, "No, this is what we need to do." But no, they went off script and they just let it run. And I mean, that was just phenomenal. It was a great moment. And then of course you hear that, "Oh, that was great," kind of thing. But in that moment, all my hard work, I felt like, for school was just ... There it is. There it was. That's what all that hard work gets you. And that's what I tell families: "It's going to be hard up and down throughout. But when you see your child walk across there and stuff like that happens," so worth it, so worth it.

Gerry Arango (29:13):
So worth it, so worth it. It's true. What or who brings you strength? How do you take care of yourself?

Diane Perry (29:23):
Yeah, yeah. There's probably a couple people who give me that strength. Again, I will reflect on being faithful, and I have my higher power that I call God. I will say that I do rely on my higher power for a lot of my guidance in my quiet time in my thoughts to really try and ... "Where do I need to go with this?" My husband of over 30 years, we've shared a lot of things as well. And he certainly gives me strength as well. My children give me strength. It can be challenging, though. Let me tell you. They can be challenging, but there's also a lot of pride there as well, that gives me that strength every day.

Diane Perry (30:08):
And again, I can't say more about those relationships that I've built. I think you had said it earlier: the people that I would not have met if David didn't have Down syndrome. I would not have been on this path. I would not have met all the wonderful people. And there are people that I still have wonderful relationships with when David was younger in other positions that I've worked in. And these people are still a part of my circle. And I have certain people that I go to for certain things, because not everybody, like you said, understands that path either. So sometimes I'm very picky as to who I talk to about what, because of I want to have that connection with them.

Gerry Arango (30:50):
Okay. I understand that too, that there are those people who you don't have to start with, "Once upon a time." You just pick up and keep going, because you're journeying together. Are there resources that you'd recommend to a listener, ways to work that parallel path for both of you, that have been helpful to you?

Diane Perry (31:16):
Well, I think those tools, those person-centered tools are good resources. Of course, nowadays you can Google anything. You can Google person-centered tools. But my favorite is the PATH, the PATH, the Planning Alternatives for Tomorrow's Hopes. I always say "Hopes and dreams." There's no "D" on it, but I always like to say "Hopes and dreams." I really feel that starting there is really important, and the work that I do. I do a lot of transition work. And I'm always telling families, even before transition, "You need to have that vision." And there's all kinds of different tools out there to just write a vision. It doesn't have to be fancy, just one page kind of thing, get a picture of your child, all those wonderful things. And so I think those tools are really important as well.

Diane Perry (32:02):
And just really staying connected, depending on whatever your individual journey is. Our journey was inclusion. We wanted David included in all aspects, school, community, everything. And really educating myself around inclusive education or inclusive environments, and what does that look like? So I would surround myself with people who are like-minded. It's really important for me to have those like-minded people. But I also enjoy a good challenge of someone who might not be so like-minded. And I always do like to challenge them as well, because I know so many successful stories, that I think I can outweigh what they say sometimes.

Gerry Arango (32:46):
All right. So in conclusion, what's next for you?

Diane Perry (32:53):
Well, we're working on getting David to move out, so that's always been a big goal for him, right? One of his ... "I want to move out. No mom, no dad, no Sarah. No." He wants to be out. In fact, today, we were just out. He's going to be in a wedding next week. And we were going to try on his tux. "I want to move out.

Diane Perry (33:13):
I said, "I know. We're working on it, we're working on it." So really just really trying to support him and figure out, what's that going to look like for him? We continue to do that. And for me-

Gerry Arango (33:23):
What's that going to look like for you? What's that going to look like for you?

Diane Perry (33:30):
I'm going to continue just trying to be healthy and take care of myself. Because I am getting older, I need to continue to stay on a healthy path. And for me, that's eating healthier. And I know that's what everybody says, but I truly do. It's like an everyday event for me around that. And I've always had the little travel bug in me, so I visited Alaska last year, my husband and I. And I left my heart there, so I have to go back. So yeah, so more of that type of stuff is good for me. That's good for the soul. That's good for the soul, to keep me moving and motivated as well. They're probably the things that I will be working on.

Gerry Arango (34:14):
Okay, that's cool. That's cool. Did I forget anything? Is there anything else that you would want to share?

Diane Perry (34:19):
No, I don't think so. Yeah, I feel pretty good out of everything that I've shared. And there wasn't anything that I wanted ... as of right now, there's nothing I'm saying, "Oh, I should have said this or that." Yeah, no, I'm really happy that you've asked me to do this today, Gerry. This was fun. Thank you.

Gerry Arango (34:39):
Thank you. Thank you so much, Diane. Thank you for taking time to share your story, to share David's story. And listeners, thank you for joining me on Our Parallel Paths today. So I hope you'll like and subscribe to our podcast. And I really hope you 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. Bye.