Gerry Arango Deeley (00:10):
(music) Hello, family member. You know, role release isn't easy. Trusting others to support your loved one when they live in the community without you isn't easy. I'm fond of a quote by John Shedd, which says, "A ship is safe in the harbor, but that's not what ships are for." I believe in the Dignity of Risk, but what's it like when something really bad happens and you are not there? And how does everyone spring back from all the feelings that the really bad thing generates? And how do we frame our rationale for living in community without mom there? Me, I still have to believe in the Dignity of Risk. Hello and welcome to season five of Our Parallel Paths, A Future for My Loved One with a Disability and For Me. My name is Gerry, Dr. Geralyn Arango-Deely, and this podcast is about just what the title says, the parallel paths of family members and their loved ones with intellectual disabilities. I'm a parent myself and I always have questions. Let's nurture and support ourselves as we nurture and support our loved ones with intellectual disabilities. There's more than one path, more than one future to talk about, and that's why we're here.

(01:43):
So this is not an episode I planned to present to you. I will be back to more interviewing next season with some new conversations, even as other things pop up like this did. It's life, you know? What I wanna share with you today is a story about something many of you likely have experience with, seizures, and how getting a call in the middle of the night that your son is on his way to the emergency room can challenge your lofty goal of community living. This is an episode about the Dignity of Risk.

(02:17):
A little background. Nic had generalized seizures and focal seizures throughout his early years. Between that and his respiratory issues, my late husband, Al and I, were in the emergency room like all the time. On a different note though, I still remember another incident of driving with Nic to Children's Hospital of Philadelphia in status Epilepticus. He was about four. It was six o'clock in the morning. I don't even know why I was driving him there, but I was, and I drove down Baltimore Avenue in Philly and I did not stop for any red lights. I just honked every time I got to an intersection, and then I looked back at him seizing, and I kept on going. At one point he was so drained that I thought he had died. I remember, too, the medical staff just grabbing him from me and running him into the emergency room like something out of a TV show. Those ER doctors and nurses and the many times we went to ERs and the many ERs we went to, they are my heroes to this day.

(03:28):
So we try different medications, have some success, then they take him off, the seizure would come back and it went on back and forth like that for about five years. We only actually stopped his seizure medication when insurance wouldn't cover it anymore, only to find out from our neurologist that it had been an ineffective dose for a while. He had done that, I guess, both to see if Nic would have a seizure with this medication that he was actually outgrowing physically. And the doctor slowed him down taking him off. The other reason was because he saw how traumatized Al and I were, and he let the titration go slower than it needed to be so that he could see what he needed to see, and Al and I could calm down. But on the good side, we saw no more seizures for 20 years.

(04:26):
And in those 20 years, Nic got his health back. You may already know Nic graduated high school, he got a job in the community, he lives in my old condo with his friend of many years. He has community support, job support, overnight support. Nic has friends. He participates in sports, he watches sports, he goes to sports. It's not a bad life.

(04:51):
I'll admit, it's a lot of work to keep this show going, but all that matters to me is that Nic is doing as well as he is, at least for now. We on the path take it a day at a time. The best part of Nic living in the community is that he does live in the community. The hardest part of Nic living in the community is that he lives in the community. He is not with me five nights of the week. I have to role release that being a caregiver piece, and of course a bit of a hover mother, to his staff, especially to the people who do the night shift, the people who are charged with being alert while I sleep. I have to trust Nic's staff. I have to give Nic the Dignity of Risk. I have to trust Nic.

(05:43):
The term Dignity of Risk was first coined by Robert Persky in the 1970s. Robert Persky was an American theologian. He was an author and a disability rights advocate, especially for people with intellectual disabilities who were wrongly incarcerated. Dignity of Risk means people have the right to make choices about their own lives, even if those choices involve some risk, because that's how people grow. Dignity of Risk recognizes that taking some risks is a normal part of life 'cause you've done it and I've done it. And those risks can lead to a positive outcome in quality of life and support a person's autonomy rather than some overly cautious approach from caregivers like me. As Nic's power of attorney rather than his guardian, I can help him make decisions, but in theory and practice, I can't make them for him. Nic has to take the risk of something happening when I'm not there so that he can live and work in the community. He's taking that risk, I'm trying to take that risk, and yes, things do happen.

(07:00):
We try to mitigate the risk for Nic. Nic's condo is wired for communication and safety and the, and we try to honor his privacy too. There's a video doorbell. Lots of people have that. There are cameras downstairs, don't laugh, they're pet cams, um, but they are not in his bedroom, even though that's where the problems have occurred. More on that later. Nic's door is closed at night because he's entitled to privacy. Nic's Alexa reminds him to take his night medication and his pill caddy goes off in the morning obnoxiously and doesn't stop until you take your pills. Medical and contact information is posted on a board in the kitchen for the staff and anybody else. Now, staff is a big deal here. I have to give power to others so that Nic has power. The closest I ever got to giving power to others with, is, with Nic's sister, is when we dropped her off at the dorm or we watched her getting sworn in to the Navy.

(08:10):
It's different with Nic. And I often think, you know, better that I give that power to others while I'm alive and well to shepherd and monitor that rather than have Nic like be clueless about how to live without me should I die, um, and not know what to do 'cause I'm not in the next room. 'cause then, you know what? He's, he's almost 28, and this is all kind of normal for most almost 28 year olds, and that's my baseline. As Eric Gall of Empowering Ability says, "We exhaust the ordinary before the special." So ordinary is living in his own home. Ordinary is living and working in the community. I think Nic really likes his life and I think he really likes it when it's time for me to leave so he can be alone till the staff gets there 'cause partly, I suspect there's an element of like raiding the refrigerator. Never mind. But it's scary sometimes, Nic living in the community, I'm not gonna lie. We have had some wonderful people supporting Nic through the years.

(09:18):
We've been blessed with staff who have been supportive of Nic for years, people who are pushing 10 years of working with Nic. What a blessing, you know? We have also had some bona fide losers, and you know who you are. And by the way, if you're listening, how could you? That's the risk too. We made a conscious decision not to use remote support. We tried it. Um, that remote support meaning that you have a company doing the tech and the communication by setting it up for you and connecting it all and communicating back and forth via tablet. Um, it did not work for us. We did try. And it might be great for some, but it wasn't right for Nic, so we ticked that box, you know? But that was the risk that allows me to be here. It's this risk that allows me to be here on earth and, and to watch and monitor as best I can. And even then, it has sometimes gone south, and actually more than once, but Nic is okay. Nic is growing, Nic is thriving, and that is the product of giving him the Dignity of Risk.

(10:38):
'cause, um, what happened here, and like I said, it was really important for staff to be doing their job, to be alert in the night. I wouldn't have been. I'd have been asleep. Our overnight, one of our overnight folks, and it happened in 2023 and 2025, she happened to be the person on watch, she told me that she heard a thud and she went upstairs and Nic had fallen outta bed, cut his mouth open, and was seizing. So she called 9 1 1, they came right away and he was taken to the hospital, to the ER, given meds at the end and we found a neurologist. And at that point, there was a side effect of anger in that medication that I, I asked once again, "Please, can we take him off, and if he doesn't have a seizure, could we just leave him off?" And we did. So it was quiet. So this is two years.

(11:34):
But what was important with regard to the Dignity of Risk was that I had to role release to someone who, if doing their job, would've been more alert than I would've been because I'd have been asleep. Now this, again, happened, and this is three weeks ago as I'm speaking to you now, but two years later, okay? So we'll never know what was going on, but we do know that this time around, because she was alert in the night, she says, "I'm just downstairs watching, you know, watching my TV on my phone," And she said, "I heard weird noises. It was not a noise that I was used to hearing from Nic." And he makes lots of weird noises in his sleep. And he was having a seizure in his bed. He did not fall out of bed this time. And that made me wonder, has this happened before? And none of us may ever know, okay? He was alert enough by the time the ambulance came to walk to the ambulance. He was, he came out of it pretty quickly this time.

(12:35):
And we have a new neurologist and a new medication that seems to be doing fine so far. I have added in a baby monitor, no video, but this upstairs you can hear whatever noise he's making, just a little better than before. And I even have one here in my house when he's here on the weekend that I can hear. And it's just one more... You, you get to know the noises he makes, but he's not, the sound of a seizure sounds different. And so I, I've thought about it and part of it was the guilt I might've felt, but I would've been asleep. This is the role release and giving Nic what he wants, which is to live in the community, and that Dignity of Risk that says, "Yeah, that sometimes things are gonna go really wrong."

(13:27):
And how's Nic? He still talks about it, so we still talk about it. And he talks about the people who were in his room that the... And he doesn't wanna ever go back in an ambulance. So we talk openly about what happened, and I try to connect these new meds 'cause it's a night medicine that he had never taken, he didn't take night meds, and the monitor that's in the room, and it seems like we're just kind of starting to heal a bit. And I do, you know, probably ask him too often, "How you feeling?" But here we are. And so giving Nic the Dignity of Risk really here meant taking a chance that something might go wrong, and it did, but it could have happened on my watch and I might have missed it. So learning to release control and release my role as primary in-person caregiver and switching to that role of being a coach, being HR, being a supporter, being an advocate, taking him to the doctor, I still have lots to do.

(14:36):
So, um, just some thoughts on that Dignity of Risk, which is something that means the world to me and is my rationale for even the mistakes that sometimes happen, is that the Dignity of Risk implies a right to choose, and that I give Nic the right to make decisions about his daily life, experiences and care. That Dignity of Risk is just part of life. Denying people the opportunity to take a risk, like living in the community without mom, could hinder personal growth and dependence. That Dignity of Risk supports his self-determination and letting him take the risk. He knows he had a seizure. He knows there were people in his room. He knows he doesn't want it to happen again. But this is part of his growth and is essential for his dignity and self-esteem. Really importantly, Dignity of Risk is risk management, not elimination. I really don't think I could ever eliminate all risk, whether I'm there or not. And the concept of Dignity of Risk doesn't mean neglecting duty of care, okay?

(15:54):
Instead, it's about supporting people like Nic to understand the potential consequences of their choices, to remember to take your meds at night, you know, things like that, and working with him to manage or accept the risks that are involved. It's life, you know? Dignity of Risk, I hope, promotes his quality of life because by telling him about it, talking about it, helping him make choices, he can engage in things that are meaningful, like working and living in the community. And it improves his overall well-being and quality of life, and that's my gift to him, and the gift that I, you know, I, I see blossoming in him, and that this Dignity of Risk... You may see it elsewhere, you know?

(16:48):
Um, it's also a concept I think about with my parents when they were older and we were in that delicate balance of, um, helping them to make decisions without being, you know, too cautious or too hover-ry. Letting them keep their dignity, and, uh, knowing that things aren't necessarily gonna be perfect because when is... Perfect is just not... Perfect isn't gonna happen. And don't let the perfect be the enemy of the good, and I think things are pretty good for Nic right now.

(17:26):
So listeners, thanks so much for spending time with me on today's episode of Our Parallel Paths. As you're listening, please know that this episode has been a bit of a mashup of information from the National Institutes of Health, the Virginia Department of Behavioral Health and Developmental Sciences, and the Mental Health and Developmental Disabilities National Training Center, if you would like to learn more. In the meantime, I hope you'll like and subscribe to our podcast, join our Facebook group, share the podcast with family and friends, and I really hope you'll return to listen and learn from more stories of people like you and me and our loved one with a disability on Our Parallel Paths. Please know you're not alone. I would love to hear from you, and so feel free to comment, to rate the podcast, to type in a comment or two on our Facebook group, and I'll see you next time. This podcast is produced by Networks for Training and Development.