Gerealyn Arango-Deely (00:13):
Hello and welcome to season three of Our Parallel Paths- A Future For My Loved One With a Disability... and For Me! I'm your host Gerry, Dr. Gerealyn Arango-Deely. And this podcast is 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 always have questions.

(00:44):
Our Parallel Paths is about creating a promising future for our adult family members with an intellectual disability and a promising future for ourselves as that role of parent, family member, caregiver, whatever evolves alongside them. Because there's more than one path, more than one future to talk about. And that's why we're here.

(01:07):
Some remarkable people share their stories on Our Parallel Paths. And I really hope that the stories and wisdom resonate with you and give you ideas and hope for your future. So for this episode, I kind of went back and forth about whether I should give you an update on my story since my March, 2023 update episode.

(01:32):
Like, is another episode updating episode worthy? Am I worth interviewing again? Doesn't it sound like somebody talking right now has issues? Mm-hmm. Um, it's been a while though since I've shared a little update about what's going on at our house in our life, our our house/condo, and there has been quite a bit, and some of which is inspiring episodes for this season.

(02:03):
You know, I'm a parent and as I say, I have questions. I'm still talking to families on this podcast. So I guess that makes me someone I can interview. First of all, we are doing okay, Nic and the family and I, and I hope you are too. Some changes have taken place since I last shared about life on our end, and some things are the same. Like I still cobble together work as an educational consultant, as a teacher, as a podcast host, and as the common law employer and power of attorney for all things Nic Arango, which takes up a good bit of real estate in my brain.

(02:45):
And, you know, some things are different and deserving of new attention, which frankly generates podcast topics for yours truly. So here's a change. Nic's sister, Courtney/Izzy, depending on who you are talking to, left the Navy. The official term is she separated from the Navy this past June after six years of service. So mom is now free to exhale (ahhhh) and to thank her for her service to her country.

(03:23):
Courtney's a busy young woman anyway, with her little family and all those pets. Thinking about being a sibling is certainly on her roster, certainly on her radar, Navy joke. Um, but so is raising her preschool daughter, finishing her education and like she and her little crew - this is exciting - moving north closer to us. Yay.

(03:53):
I am so blessed that she and Nic are close and that though her late father and I never said he's yours. When we die, she embraces a commitment to her brother that I truly feel blessed to see in her with everything else she's got going on. And I'm glad her husband Shane, is on board as the two of them understand all of this today in their busy lives as they transition to their next adventure.

(04:23):
I continue to seek out siblings from my podcast because they're on the parallel path too. Nic is doing pretty well, which here it is. It's like sometimes I think it's way too much the gauge of how I'm doing of my self-worth. Hence an episode entitled Individuation, aka, What do You Want with social worker, parent and advocate, Maleita Olson.

(04:54):
Is, is Nick doing well because of me, in spite of me (laughs), with my support or something else, some combo? Does it make me a bad parent if Nic or Courtney struggles, frankly, did my own parents take it personally when I struggled? Is that a a generational thing, something that's developed through the decades? Does it transcend disability? And in, in short, what is with all the hovering. Maleita offers some really great thoughts on this topic in that episode. It's a really good conversation, so I hope you'll find it and give it a listen.

(05:37):
Because here's the thing, um, it's, Nic has had a bit of a, a bump and is just now getting back. I hope to, doing okay. There have been some struggles and, and you know what there's a part of me that blames myself (bleh).

(05:56):
We experimented, first of all with remote supports earlier in the year for about three months. We had the house hooked up with all kinds of technology and sensors and a two-way visual system to talk to him so that we could try this grand experiment of Nic being home alone for an extended period.

(06:21):
And also to be able to be alone overnight, just one night a week. All that tech though, all those sensors, the two-way stuff, whatever, it just did not work for Nic and it did not work for us. We had a hard time letting go. Um, and sometimes the technology just plain didn't work.

(06:47):
I'm not sure in hindsight that it was maybe just a bad fit for Nic's level of need, but you know, I, I don't wanna throw a company under the bus because of our experience. Or maybe, or maybe the company itself really kind of was the not ready for primetime players. If you are old enough to remember the Saturday Night Live First Seasons, (laughs). The grand experiment of remote supports was an epic fail at the condo.

(07:21):
But I'm glad, I think that we took a chance, because it has been just about impossible to hire overnight staff. And all we wanted was weeknight coverage. We ended up going with a home health aide after the remote support stuff 'cause we're all like freaked out.

(07:43):
One of the home health aides lasted and is still with us and she's lovely. Two did not. The aide who lasted was the one who caught Nic in the middle of a tonic-clonic seizure. One of those whole body events, something that has not happened to Nic since 2003.

(08:05):
The aide heard a thud, she said upstairs and she found him out of his bed having fallen on the floor in status epilepticus, as he had been so often so long ago. The aide did all the right things that no remote support could have done. She provided comfort. She called 911, she called us and Nic is back on seizure medication, something prescribed in the emergency room.

(08:37):
So the first week was super grogginess, falling asleep at work, falling asleep, being just out of it as he adjusted, I guess. And that segued into some aggression as in hit your staff - having never done that, ever. Smash your phone, your favorite thing, aggressive.

(09:00):
And so this particular medication, I thought maybe this is not a good one for Nic. So when we came back for our follow-up neurologist visit, the neurologist did ask, has he had any seizures? And I said, no, because I, no one has reported them. I have not seen them and that's all we've got, you know?

(09:24):
And so when I asked him if Nic could be taken off of the medication, he said, yeah, you know, um, because I personally believe that the seizure was triggered by, and this is just Dr. Gerry talking, um, too aggressive of an increase in thyroid medication. That's my hypothesis and I'm sticking with it.

(09:44):
Um, and so now the wait begins. One week with no nighttime dosage, the next week taking away the daytime dosage, and now there's nothing. I hope Nic never has another seizure surprise. I mean, I get to hope that, and I need to believe that no one was at fault. It just happened. We don't know if it's coming back or if it was a one and done.

(10:16):
It's just a crappy thing that happened to my young man. And if it happens again, I guess we'll go from there. And I personally am gonna ask for a different medication.

(10:29):
Finally, my dear husband Michael has taken a level of interest in future planning that is frankly so Michael and frankly so needed. Really, really. Or, um, he had questions and was not getting quite enough answers from me.

(10:48):
Like, what happens when Nic turns 26 next year and is off of my (Michael's) health insurance? Well, we learned that and it's okay. Just gotta know. Be ready for the transition. When do Michael and I truly retire and start collecting our social security? Since the answer is not as simple as it seems. Go figure. No surprise. I guess too, being disability is involved, we're learning that too.

(11:23):
And of course, what happens when I die, you know, because Nic's biological dad passed nine years ago.

(11:34):
Michael could start a post-retirement career if he wants one or maybe a podcast answering questions like these for my friends and me, (laughs), and everybody else.

(11:44):
Actually, that post-retirement career seems to have started already as, uh, one of my parent friends tells another of of my parent friends who tells another of my parent friends that Gerry's husband is pretty savvy on this topic.

(12:00):
But I still have questions and I have a podcast. So I'm gonna keep trying to address those.

(12:05):
And uh, maybe Michael, you wanna chat on the microphone?

(12:11):
We have a good season coming on Our Parallel Paths. So thank you so much for taking a few minutes to listen to my little update today. And thank you for joining me on Our Parallel Paths.

(12:25):
I hope that you will like and follow our podcast, and I really hope that 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. See you next time.