Gerry Arango (00:18):
Hello and welcome to Our Parallel Paths: A Future for My Loved One with a Disability... and for Me! My name is Gerry 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 questions.

Gerry Arango (00:51):
On Our Parallel Paths, we'll talk about creating a promising future for the child with an intellectual disability who becomes an adult and a promising future for ourselves as our role as parent, family member, caregiver. Whoever we are evolves alongside them. There's more than one path, more than one future to talk about. And that's why we're here. Some remarkable people will share their stories in upcoming episodes. I'll be listening with you, and I'll have some questions for our guests too.

Gerry Arango (01:26):
I thought I'd launched the podcast with a little information about the podcast format, about myself, my family, and our story. I would then ask myself the questions I hope to ask future guests after they share their stories. It's only fair, right? And I get to test drive my questions and I answer them. I'm giving my future guests a list of topics that they can choose from to help them figure out what they want to share, and I'm going to pick what I talk about today from the same list of topics.

Gerry Arango (02:00):
I'm going to ask that my guests talk for 10 minutes or so on their chosen topic or topics before I ask them questions in the second 10 minutes. Let's see how that goes with me. I'd like to share about 10 minutes of my thoughts on something called the dignity of risk. Again, my name is Gerry. There are three or four of us living in my condo right now, depending on the day. When I purchased the condo in 2016, I was the two years widowed mother of Courtney, who was 21 at the time, and Nicholas who was then 18.

Gerry Arango (02:43):
Nick has down syndrome. Their dad, Al, passed away in 2014 after a short bout with a very aggressive form of cancer. I lost the only person with an equal interest and love for our children, and someone who knew the system because of his own work in the field. My kids lost their dad. When I bought the condo, first of all, I thought of it as a way to escape our family house, which had just become too sad for me, but also a purchase to finish out Nick's time in our school district that I could afford alone and stay in it for a couple years.

Gerry Arango (03:25):
But over time, I started to think, well, this place could be perfect for Nick to live in with support someday without me. Our condo fee buys us a no maintenance exterior so I don't have to worry about the lawn or the trash or the recycling or the shoveling. Ha, ha! Plus a pool? Love the pool. But there was a lot going on in our lives before Nick living here with supports would go beyond like a thought, an idea, and become a real focus.

Gerry Arango (03:55):
My daughter would move in several different directions before ultimately joining the Navy and moving to Norfolk in 2017, marrying in 2018, deploying to the Persian Gulf and becoming a mom in 2021. Nick had secured waiver funding early, unfortunately, because of behavior issues. We had some staffing at home already. Nick also had behavior support at school, TSS, mobile therapist. He had the whole compliment.

Gerry Arango (04:26):
At 18, Nick needed to finish high school and moved through the 18 to 21 years trying out work experiences with the support of the district and our chosen agency. It worked out pretty well and Nick landed a part-time job at a children's gymnastics center, but only about six hours a week. He had staff about 12 hours a week, so it really didn't add up to a very full life. Then the pandemic. Enough said. No job, staffing compromised, but we were lucky to have some great folks who hung in with us.

Gerry Arango (05:05):
We kind of created our own pandemic staffing bubble. Now, me, I'm a professor of education emerita, retired in 2020, and I became a wife again. I was so blessed to become a wife again in 2017. You got to know, not all men, I think, could walk into the life of a widow with two young adults, one with a disability still in the house and not one to quietly back out into the yard, back to his car. But Michael and I are five years and counting. After almost 20 years in academia at a small college 30 miles from home, Nick aged out of the IEP at 21.

Gerry Arango (05:51):
He and I both lost the school day they gave me the freedom to do my job and gave him the hours of engagement that he built his life around. I realized that I was going to have to rethink what life would look like for me and for Nick. The good thing about 20 years at a university is that you accumulate a whole lot of sick days. I took paid family leave using those days, because I was able to take care of Nick as, get this, an adult son with a disability incapable of self-care. Hated that. But it gave me time to do some soul searching.

Gerry Arango (06:28):
I knew that I hadn't been really happy at the college for a while, and I kind of pinned it on the starting of my losing of heart for it all, and Al and my Al died. But this new husband, my Michael, how was I going to tell him I needed to make such a big change in our life so early in our marriage? Here was another person about to be impacted by the end of Nick's IEP - him, me, Nick. I promised Michael there would be no, "Well, Mickey, can I have my allowance to buy a new hat?" I had saved money.

Gerry Arango (07:04):
I had downsized and I had put away a pretty healthy retirement plan that I could draw on eventually. Plus, I could still teach part-time. I'd been invited to work on a small grant. I'd gotten certified as a supports broker. I was an educational consultant. I knew I'd have a little pocket money and now I'd have a lot of flexibility. I retired. I quit. Whatever. I left. The first risk was my own. Would I be able to create a new path for myself without the anchor of a full-time job?

Gerry Arango (07:41):
Not just for the money, but for the relationships and the professional fulfillment. The next risk was Nick's. What kind of path would Nick be on after the IEP was over and all the entitlements of K12 became things he'd have to qualify for? What was going to be expected of Nick? How many times had the school's transition coordinator told me about the great day program she had in mind for Nick? That was supposed to be his next move. That was his next assumed step.

Gerry Arango (08:16):
When I said, "Nope, not the plan," a little part of me wondered like, was I being unrealistic? That when she said, "I worry about Nick," did she know that I worry too? But worry wasn't going to get my son out into the world. Worry wasn't going to get my son a competitive job in his community. Worry wasn't going to eventually turn my condo into his condo with a friend and support staff.

Gerry Arango (08:44):
I'd have to give Nick a chance to live the type of expectations the world would have of him if he didn't have a disability - a job, opportunities to go places with me and without me, which is actually his preferred opportunity, opportunities to take care of himself without me, because I won't be here forever. I have to put Nick out into the world before I'm gone. I have to let him take risks. Let him try things, like have success and mess up and all the things we all do. I have to give my son the dignity of risk.

Gerry Arango (09:20):
Notice, you may already have noticed, that I started talking about Nick first, about my kids before I talked about myself. I think that that's natural, but I think it's even more pronounced when disability is part of your family story. Disability often changes the path of everyone in the family. How do we strike a balance supporting our loved ones, as well as taking care of ourselves? That's the parallel path families and their loved ones with disabilities are on. I now have the questions that I told you about.

Gerry Arango (09:58):
These are the questions I'm going to ask my future guests. And since I am the first guest on the podcast, I'm going to ask them of myself. Gerry, what did you do, what did you think about to get yourself emotionally prepared to support your loved one, to support Nick, into adulthood? And when did you start thinking about it?

Gerry (10:21):
Well, I started thinking about it, I mean, vaguely, forever, but certainly at the point where we were at technically transition in the IEP, so we're talking 14. Now people were focusing on it. It was in the IEP, new pages that had been empty for years. We were thinking about it and talking about it. I started also thinking about it even more so after Al died, because I was suddenly... I do remember my first IEP meeting without Al and just being adrift. I started thinking about it even harder after Al died, because I knew that I was now at the helm of the whole thing. But what I did to sort of prepare myself emotionally was a lot of talking to people and a lot of listening.

Gerry (11:15):
Every conference, everything I could get to, every training I could take I took, and especially I was interested in learning more about planning tools. I had known about doing PATHs and I have loved them forever. I even do them with my classes. And with the life course tools, which is another way of sort of mapping out and planning out that transition to adulthood. I'm a big fan of putting things on paper and that helped me. It also kept me and keeps me accountable.

Gerry Arango (11:53):
Thanks, Gerry. What do you wish you'd known before you started?

Gerry (12:00):
A lot of things probably. But I think just to piggyback on what I just said, the strength of doing more person-centered planning and the strength of drawing on people. One of the things that happened in the last time we did a path in drawing on people is several people who we were sitting together with doing Nick's PATH, I said, "You need a PATH too," and it's true.

Gerry Arango (12:29):
Thanks, Gerry. Tell me about a time you feel like you messed up or regretted what you did and how you handled it.

Gerry (12:37):
Oh, just the one. For one thing, I'll give you my most recent slight foible here is I'm a little unbalanced with regard to what this retirement thing looked like, because I thought you were supposed to work a bit less, but I find that I'm working plenty, which is a blessing. It's great. But I think I may have taken on too many jobs. I said yes to everything. And as much as I'm learning, I keep having to look over my shoulder and say, "How am I doing with the Nick piece," which is why I left in the first place. Part of it for me is that need to keep balance and take time to reflect on what's happening right now with the very purpose I retired for.

Gerry Arango (13:21):
Gerry, what is something you are the proudest of?

Gerry (13:25):
Well, Gerry, I am proud of my being able to make it work without a classically full-time job. Even though academia is not quite a full-time job in the same way, it's one of those jobs. Teaching is always one where people think, "Oh, you have all this time off," and you don't.

Gerry (13:42):
You physically may not be in the building, but you are planning and planning and planning. Ask any teacher, professor, whatever. But making it work without a full-time job, so that my brain was where I wanted it to be, not just where it had to be and where I needed it to be. I think the other thing I'm proudest of is that I feel as though little by little, but we did it, we got through the death of my first husband and the children's dad. Although you never quite get over it, you learn to move forward.

Gerry (14:18):
I think each and our own way, we are moving forward. Even when we slip back, we continue to move forward. I feel like that's... I think he would be pleased.

Gerry Arango (14:30):
Thanks, Gerry. What brings you strength? How do you take care of yourself? And what are some things you do to stay strong?

Gerry (14:39):
Thank you for that question. I draw a lot of strength from others, from my family, who's always there for me, and from my faith. I try to be a person of faith and try to keep a faith perspective. I don't know. I find that I don't know that I always need some great big vacation. I just need to make space in the day, make space in the week to just do something for myself. It doesn't take long, but it has to be on the menu.

Gerry Arango (15:17):
Gerry, what resources do you recommend for those of us on our parallel path?

Gerry (15:24):
Again, I'm a big fan of person-centered planning. I'm a big fan of any kind of graphic organizers that helps you to see things that you're thinking. It puts your thoughts and your ideas onto paper or virtual, whatever, like the path, life course tools, et cetera.

Gerry (15:44):
But another thing I think about is little mantras to get through the good times and the not so good times. I kind of started 2022 with a couple of them that I just say to myself more often. One of them is to find the good, and that's the good in what happens, the good in people. Another one, you have something to offer. I have a lot of degrees and experience and things, but I still always feel like, what do you have to say that anybody would listen to? Thanks for the podcast, but I'd like to believe that I do have something to offer.

Gerry (16:28):
It may be information or a listening ear, but I have something to offer. Don't take it personally. That's been my longest running mantra and probably the one I deal with the most and struggle with the most, but I do believe that most of us are just trying to get by. Sometimes what we present to the world is the best we can present in the moment. If someone or something goes really at you, it may not have that much to do with you. I find that if I really look, that that's almost always findable.

Gerry Arango (17:06):
Gerry, are you giving back? Are you showing up for others? And if so, how?

Gerry (17:12):
Well, one of my new favorite ways to show up is for my daughter and my spiffy little granddaughter. She's a year and a half as I'm saying this to you. They're down in Virginia. She and her husband are busy with their lives and little one is growing up in a pandemic. Whenever I can get down there, I go down there and I help out. That's one. Supports brokering, which I do kind of formally and informally.

Gerry Arango (17:38):
I try to be there for my participants. I find that when people ask me questions, I answer anyway, or I try to find someone who can if I can't help myself. And then I also want to get back to volunteering. The last volunteering I did was at a COVID site where people were getting their vaccinations. And then the site closed and I wandered back away into life. I'd like to get back out there and get back to giving back of my time.

Gerry Arango (18:08):
Gerry, our last question, what's happening next on your parallel path, the path for you and your family member?

Gerry (18:17):
As we speak, Gerry, this is one of my new challenges, but one of my favorite challenges, we are on the road to one of the things that we had talked about forever, which was, again, the condo idea of turning it into a place for Nick to live with supports. Because in my world, the idea of all of this is not that Nick ends up in his sister's basement when I'm gone. We're trying something out that is a little dicey as the common law employer to try to make happen, but we're doing it.

Gerry (18:52):
One of Nick's oldest friends has moved in and we are working on the staffing, so that my husband and I can eventually move into our house in Delaware. You may hear more about that endeavor in future episodes, because I think it's going to be an interesting journey.

Gerry Arango (19:10):
Thanks, Gerry.

Gerry (19:12):
You're welcome, Gerry.

Gerry Arango (19:13):
Thank you for joining me on Our Parallel Paths today. I hope you'll like and subscribe to our podcast, and I really hope you'll return to listen and learn more from stories of people like you and me and our loved one with a disability on Our Parallel Paths.