Geralyn Arango-Deely (00:21):
Hello, and welcome to Season Two of Our Parallel Paths, A Future for My Loved One With a Disability... and For Me. I'm your host, Gerry, Dr. Geralyn Arango-Deely, parent, professor, podcaster. Our Parallel Paths is about creating a promising future for our adult family members with an intellectual disability, like my son Nick, and a promising future for ourselves as that role of parent, family member, or caregiver, whoever you are listening. It all evolves alongside that. There's more than one path, more than one future to talk about, and that's why we're here.

(01:01):
A little about my family today. My son Nick is going to be 25 in March. 25. 25 is one of those milestone birthdays that may come with a bit of extra celebration, which we will spend the month planning. The other celebration is that Nick made it to 25, because Down Syndrome was the least of his health issues as an infant and toddler.

(01:29):
25 is one of those milestones families might notice and go, "Wow, where did the time go?" I know I felt that way with my daughter, Courtney. Nick has been an adult for several years now. By law, he could have joined the military several years ago, like his sister did. He has been voting for years. Nick will likely never drive a car, though he could have been behind the wheel since 16.

(01:56):
But Nick's prefrontal cortex, according to science, is at 25, fully developed, give or take a little for individual differences. We're talking about attention and focus, understanding cause and effect, impulse control, emotional control, planning for the future, comparing risk and reward. All the characteristics that define executive function. All those characteristics, all done pretty much, says science.

(02:30):
So Happy Birthday prefrontal cortex! Nick will celebrate his 25th birthday as anyone would. But what does 25 look like on Nick as a person with an intellectual disability but has made all those features of executive function, as well as academics, a lot more challenging to master? Much as there's no switch that flips for anyone at 25 like, you know, congratulations, your brain's all grown up and so are you. I believe that there are additional challenges for helping Nick see himself as the adult the law says he is, the adult his brain says he's mentally ready to be, as science tells me.

(03:14):
The other challenge to Nick's adulthood, his adulting, is his mother. Nick has the great misfortune of being born to a late baby boomer, the generation of the hover mother. And as much as I may have done some hovering over his older sister, it was nothing compared to how his late dad and I, especially I, me, hovered...

(03:37):
As we lived on high alert for the respiratory issues that would eventually lead to emergency surgery, as we argued with the school to include him more, as we planned play dates and team sports in a way that made us have to be so much more intentional and vigilant about relationships, friendships, and low expectations than we ever had to be with his sister.

(04:01):
With his sister, moving into adulthood was her transition to opportunities to make her own decisions. To learning from her mistakes and having the space she needed to grow and develop into my, quote unquote, favorite daughter. You heard that, Courtney? That was for you.

(04:18):
She and I remain close, though she is far away. I try to be there for her and her little family as best I can. But being there looks very different for Nick and me. I think I'm still a hover mother, though now I'm hovering over a 25 year-old. Shouldn't I be giving him space, too? I can. I should. I can. I want to. But how?

(04:47):
We have our parallel path, Nick and I, and we have friends on a similar path, which helps so much. I listen to their stories. I try to be there for them. And I definitely learn from them. So it makes sense for me to continue to look for other parent voices as we continue to draw on our collective wisdom to help me provide Nick opportunities to do the same things his sister did. You know, to make his own decisions, to learn from his mistakes and have the space he needs to grow and develop into my, quote unquote, favorite son.

(05:22):
So I jumped on EmpoweringAbility.org, which you may recognize from episode one where I chatted with Eric Gall. Eric has a wonderful tool that I downloaded awhile back called The Ultimate Guide to Independence. In this little freebie surveyed and boiled down to five things parents have said that they needed to do, that they needed to do, to help their adult children be more independent. Let me share the list and then I'll elaborate a little.

(05:53):
One, believe the impossible. Two, get out of the way. Three, get comfortable with broken plates. Four, beware the hero, or the she-ro. And five, we all need support.

(06:11):
So my spin. One, believe the impossible. If I don't believe Nick can do it, who's gonna believe Nick can do it? What message am I sending if I don't believe Nick can do it or somehow communicate, even when I'm saying it, that I don't believe Nick can do it? Believing the impossible is what I had to do when he was a sick, sick baby and the doctor said his infantile seizures would probably fry his brain.

(06:43):
I had to believe the impossible when the school said he should go elsewhere for his education, and my husband and I believed that he needed to be in his neighborhood school. And oh yeah, that he wasn't going to graduate into a day program, but he would work and live in his community.

(07:01):
And I have to believe the impossible right now, through all the ups and downs of Nick now living in my old condo with his best friend, and the supports that they need. That's a whole other episode, and it's coming. I'm trying to wade through my own self doubt. Are we doing the right thing when those supports falter? Are those mistakes okay? As I talk to other families who have chosen the different path, can I still believe our impossible? Or does the self doubt creep in? It does creep in.

(07:39):
But I believe our path is a good path. It's our path. And maybe it isn't so impossible.

(07:48):
Number two. Get out of the way. This one is for the hover parents, like me. I want everyone to believe that Nick can do it with supports, but sometimes I don't know if I really think I believe it. Sorry, Nick. I believe being told by a doctor, I remember this, being told by the doctor that Nick had been so sick as a child that we would likely have (laughs) extra getting out of the way to do, because sometimes in those instances back then, we were actually fearing for his life. This is true. This extra has been tapering off for me for like two decades, and it isn't totally gone.

(08:25):
And as I check in with our staff remotely, like texting and calling sometimes because I'm not physically in the house, am I wrestling myself? Am I losing my identity as Nick's mom, the one who hovers? Because that's what you're supposed to do. Do I need a new identity here? How uncomfortable am I with these changes?

(08:49):
Three. Get comfortable with broken plates. I am both okay and not okay with the broken plates. For example, I know that Nick is safe in the condo by himself, but I feel like I can't leave him alone there. Fun fact, I can. He isn't going to bolt. He isn't going to set a fire, I don't think. He is, however, going to raid the refrigerator. And is that the end of the world? Hm, hm, not really.

(09:22):
Will I continue leaving him alone for longer and longer periods of time? I have to. And mistakes will be made. Refrigerators will be raided, and I will have to live with that in the name of letting him be more independent. I mean, maybe the fridge will get less interesting when it isn't something he can get away with because I'm not there.

(09:45):
Who am I kidding? Because we, I mean, all love to raid the refrigerator now and then. Nick is not the exception. That broken plate thing isn't that big of a deal if it means Nick gets to try.

(09:57):
Number four. Look out for the hero, or the she-ro. I remember when he was little, Nick hugging people who were really not appropriate to be hugged, and people going, "No, no, no, it's okay." I hated that because I always thought, and I probably should have said, you know, you'll think he's a perv when he does that to you at 40. Because this well-intentioned person is a tough one for me.

(10:25):
And it's not an old issue. Recently at a party, Nick got out of his chair to go get food, you know, joined a line, which he cut. And when he came back, someone was sitting in his chair. He asked for his chair back and they got up. I mean, I didn't think Nick should have asked. I wouldn't ask. But the person said, "Oh, but he was so nice about it." And that response just undid a whole lot of the expectation that had been set by us that you just don't do that. Go find another chair.

(10:58):
Because I know my guy, when you do anything for him. I have seen requests made for things he can absolutely do himself and the first instinct that even I have is to do it for him. It's easier sometimes, it's faster sometimes, and sometimes, actually sometimes it's a little okay. But I need to try not to be the she-ro, and to try to remind Nick that he can do it or try to do it.

(11:32):
What do I do about others who are, you know, just trying to help, or who feel that Nick can't do it so they can do it for him? That is the challenge, which leads to number five. Because number five is that we all need support. Because well, you know, God bless America here. I mean, I think Americans on the whole believe that we are truly independent. A great big individual Fourth of July party.

(12:00):
We do it ourselves, because that's the right way to go. We are self-made men and women. But really, who among us hasn't needed or benefited from the support of another, at some point along the way. I am so supported by friends and family and the people I work for. I couldn't do it without them. I like the word inter-dependent for myself and I like it for, well, everybody. It is a really good, realistic, generous concept and allows us to help and support each other with feeling, without feeling like it's some kind of, you know, lesser state.

(12:42):
If I'm inter-dependent, Nick can be inter-dependent, too. And maybe more so. But it's the same term I apply to myself, so let's just let it rest happily there. We are all, all, all inter-dependent. It's okay.

(13:00):
So anyway, I can't say enough about how much these steps that Eric Gall compiled resonated with me. How about you? And maybe what steps would you add to this list? I love the phrase "dignity of risk". Dignity of risk means that it's a person's right to take risks and be able to realize that the experiences and the result of those risks may not always be positive. And it's okay. I want that for Nick. I want that for myself. I want to stop hovering, or at least hover less and less, though I'll always be there on our parallel paths.

(13:40):
And to my listeners today, thank you for joining me on Our Parallel Paths. I hope you'll like and subscribe to our podcast, and I really hope you'll return again and again to listen and learn for more stories of people like you and me and our loved one with a disability on Our Parallel Paths. See you next time.