Gerry (00:20):
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 abilities. You know, I'm a parent myself and, you know, I've had some questions. On Our Parallel Paths, we talk about creating a promising future for the child, quote, unquote, with a disability who is now an adult, and promising future for ourselves as our role as parent, family member, caregiver, whoever, evolves alongside them. There's more than one path, more than one future to talk about, and that's why we're here. This is episode six of season one, and I thought I would use this last episode of season one as a bit of a wrap-up, some takeaways before we start season two, because I've had the privilege of having some marvelous people come on to season one of Our Parallel Paths, starting out with my good friend Diane Perry, with our remarkable Ruth Landsman, with Darcy Elks, a visionary, and with Suzanne Muench, a sibling, an important voice for us to hear.

Gerry (01:52):
As I listened to these folks, asked them some questions, I also thought about the things that I wanted to hang onto, as this season ends and when I am back in my own little bubble, and things I hope that maybe you took away as well. But I came up with a little list of stuff here that I wanted to share with you in light of things as we are at our house, because we are still working on Nick's transition to living in my condo with his friend and supports, and it's been a bit of a bumpy road, still trying to, you know, adjust everything so that my husband and I can live in our, our house and kinda go back and forth. And trying to be Grandma to my little Vivie, and just trying to have a life, you know? Just like you are.

Gerry (02:45):
And so, I present to you some thoughts as this season closes, this just about stuff that I take away. I hope you'll think about things maybe you took away as well, and maybe we'll have some overlap. One of the things (laughs) that are, is painfully obvious to me, and I guess because I've been working on it forever, is the idea of learning to say no. We're so, often so [inaudible 00:03:19] people who really mean to be helpful and supportive. And I think for me, it's like I have to be careful that being helpful and supportive doesn't mean you have to do everything you're asked to do. But for me, learning to say no was a takeaway. We're working on it. But having heard it from other (laughs) people, and also that they struggle with it too, I know that I have work to do.

Gerry (03:46):
Another takeaway, to learn to ask for help. It doesn't mean that you have to be in some desperate place. It just means that once in a while it's not a bad thing, it's not a failure to realize that, you know, can you give me a hand with something? And that's something that we are sometimes nervous or afraid to ask of other people, of family members, of those who are in positions where they are trying to help us, and we have to ask for a little more. I'm thinking about that learning to ask for help as a, a positive, or a neutral, you know? It's just okay to do that.

Gerry (04:30):
Another thing I think about is this idea of finding my drive, you know? Several people spoke about that, that there are people that we have around us. We all certainly a share of folks around us, but there is maybe a, uh, I don't know if you have this, but I think I do, a little bit of a core group where they may understand on a level that is just that much more... something, but you get it. You know? Especially, think like when Nick had his behavior problems. I could shock some people by telling them things, and there were others that I did not shock. And that was, they were my tribe. Um, but I also think about that as who are the people I have in my life, where every time that something happens in my life, it's kind of like you're saying, "Once upon a time," and you're starting from the beginning, and you're explaining things away. Are there people, uh, in my life, I hope there are people in your life where you just start out with... (laughs) [inaudible 00:05:38] this is what happens 'cause they already know my story. And I don't have to kind of reframe everything. It's kind of relaxing to have people where you just go, "And then this happened, and then we did this." So I hope, I hope I'm a part of someone's tribe, and I hope that people continue to be part of mine.

Gerry (06:01):
I wanna, that's the other piece I think about, is to be that friend, that person who understands. I think that listening is a tremendous amount of work. (laughs) To really enter into someone's story, so easy to say, "Oh, same thing happened to me," but just shut up and listen to empathize, to, you know, validate, to just listen. And so, I'm hoping that I can continue to try to be that friend, that person who just, just understand. There may a point of the wisdom sharing, but maybe sometimes you just need to let people talk. And it's hard, but I think it's a good thing.

Gerry (06:48):
Um... one of that things that, um, we spoke about, and, and Suzanne spoke about, was the sharing of information. Um, I think about this in terms of who needs to know what Nick might need if I were gone tomorrow, will be gone, you know? Especially because I am the mom. Dad has already passed, but what happens if something really bad happened to me, and you know, I kinda think I'm gonna live forever. I think we all kinda think we're gonna live forever. But... share the information with whoever really needs it. I know Suzanne shared that it was something that was not shared fully until it was too late, and that makes me think about my own daughter, my own family, and what people need to know. I can think of other folks who I would want to know, to have that extra level of knowledge. But I do think my daughter's kinda, kinda the head of the show.

Gerry (07:57):
And what do I do with that? So I continue to kinda kick that around, you know, having those conversations. And maybe not, maybe not the whole conversation, but to broach the topic to... as, as I'm thinking about things. 'Cause, you know, for me, Nick's life is kind of this work in progress that we're working on together, and so, I don't have answer now that I would have five years from now. But let's start talking. There's some wonderful tools that people spoke about, life course tools, PATH, and these person-centered planning tools, and we're very, very... interested in these as ways to help with our family's vision. So, one thing, use them whenever, you know? It's not too late to have a vision. Oh, my child is... my, you know, my son, my daughter is 40, and you've already got the tools for a vision because you have that person. And so, for us at our house, the vision continues to evolve. The vision 10 years ago doesn't look like it did now, but that's okay.

Gerry (09:04):
So, I think with people, even if we don't have, where they, "I, I never thought about that," it's okay. Think about it now. When I said try the tools on yourself, all those tools, like at LifeCourseTools.com, or Inclusion.com, you can find these. You can Google a picture of a path, and try that on yourself. I've done that, where it's just like I'm just sitting all by myself, playing around with this for myself. What would I like to be doing in five years? It helped me to make some decisions in these last couple of years where, uh, I had to figure out, could I afford to actually leave my full-time job and pick up other work, uh, you know, just have that kind of flexibility? And looking at using those tools on myself helped me to see that while it wouldn't necessarily be easy, it, it, it could happen. If you look up Life Course Tools, if you look up ADS or MAPS, these acronyms, try them on yourself. Print one out, because this podcast is about creating a future for yourself as well as your loved one with an intellectual disability. So, that's all right. I tried to do it and it, it doesn't hurt, you know?

Gerry (10:18):
Dignity of risk, well, one of my favorites, thinking about the dignity of risk, a ship is safe in the harbor, but that's not what ships are for. And we just took on a new overnight person, and Nick was home with this person for the first time this past weekend. And I, as I, as we left the house to go down to the other house, just felt this, just weird kinda heady feeling of, "What am I doing?" You know? And... I realized I'm, I'm giving him the dignity of risk. We did as much as we could to understand who this person was, and we hope that this worked out. And if it doesn't work out, then there are, you know, then we get someone else. But it's this strange feeling. And yet, if I just hold on tight to him, neither of us is going to grow.

Gerry (11:21):
And you know what I learned? And, and I know from folks who spoke about that too, Darcy spoke about that, was that... Dianne spoke about it. That our kids are stronger than we sometimes think, that they are more resilient, and that we can actually enjoy their fabulousness, even [inaudible 00:11:41] the world has turned them into piles and piles of paperwork, you know, from the IEP days into the ISP days, and I, I, I, I need to remember that I really quite get a kick out of my son. And I know that everyone I interviewed gets a kick out of their loved one as well, that their sparkle and their joy and their weirdness and their quirkiness and their... just whatever, is a gift to all us, and that... gonna be okay. And that maybe not be okay that we think it's gonna be, but it's gonna be okay. And I wanna leave you with that thought, 'cause I truly believe, in the end, even though may not be the okay we planned for, that we're gonna be okay. They're gonna be okay, and we may have to do the extra work that ourselves be okay too. Depends on who you are for that, but for me, I know it's a little bit more of like, "Oh, yeah, don't forget yourself."

Gerry (12:54):
And so I hope that you take care of yourself, and, and thanks so much for taking time to listen this season 'cause we've got another season coming up. Thanks for joining me on Our Parallel Paths today. I hope you will like the podcast, I hope you'll subscribe to the podcast, rate the podcast, and I really hope that you return to listen and to learn from stories of people like you and me, and our loved one with a disability on Our Parallel Paths. I know you're busy. Know you got a lot going on, got a lot going on too. But I'm glad you're here. I'll see you soon. See you next time, bye.