What does autism mean to YOU? part 1

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[SPEAKER_00]: Hello, hello, and welcome to another episode of Beyond The Spectrum.

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[SPEAKER_00]: Every age, every need, I am your host, Sean Francis, and I am joined by my co-host, my cousin, my partner and thrive in crime, Mr. Maurice McDavid Maurice.

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[SPEAKER_00]: Good to see you.

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[SPEAKER_00]: Hello, everybody.

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[SPEAKER_00]: Hello, hello.

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[SPEAKER_00]: And today we are going to be talking about what is I think sort of a million dollar question which is what does autism mean to you because it is different to each person based on their experience based on the diagnosis based on what that plays out in a day to day basis and then based on who you are and that's the term and obviously based on your experience in life.

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[SPEAKER_00]: So we'll get right into it on another episode of Beyond The Spectrum.

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[SPEAKER_00]: All right, as we drop the groove, let's begin by thanking our partners, Billy Footwear, Billy Footwear.

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[SPEAKER_00]: They are makers of adaptive footwear for everyone, the story of the founder, Billy Price, is one that is beyond inspiration.

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[SPEAKER_00]: Billy was paralyzed and had to learn how to do everything over for himself.

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[SPEAKER_00]: And he was able to do that with the exception of putting on a shoe.

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[SPEAKER_00]: A prototype was made in Billy Footwear.

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[SPEAKER_00]: It was born.

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[SPEAKER_00]: They sold over a million shoes, a million pairs.

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[SPEAKER_00]: I sold over a million pairs and have impacted countless lives.

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[SPEAKER_00]: And if you click on the link in the show notes and at our website and in our posts, you will get 10% off your final purchase and that includes when they have sale events.

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[SPEAKER_00]: The other thing we want to do is encourage you to join

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[SPEAKER_00]: our men's group, which is known as the Dan.

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[SPEAKER_00]: That is a support group that is created for men who are caregivers to those with special needs or a diagnosis.

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[SPEAKER_00]: Where is if you can't just before we jump into it, tell you know, our view is just a little bit about what the Dan has been like and meant to you.

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[SPEAKER_01]: Yeah, I haven't been one of the original attendees at the Dan.

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[SPEAKER_01]: I can speak to that it's

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[SPEAKER_01]: It's a place where dads can come and unload or share or encourage or or realize that you're not or listen, you realize you're just not on your own that there are other who are facing similar challenges similar blessings have similar questions and it's just a very encouraging validating space for

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[SPEAKER_01]: You know, men who are taking care of family members who have various diagnoses, so it's been a blessing for me in so many ways, we can do, we can do a whole show on that for sure.

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[SPEAKER_01]: Yeah, I'm just going to encourage you, if you're a, if you're a man.

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[SPEAKER_01]: That is in a caregiving role, I can't imagine why this wouldn't be a blessing to you, so that's mine.

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[SPEAKER_00]: there you go.

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[SPEAKER_00]: And I'll just say one last thing about it.

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[SPEAKER_00]: I was invited to be a member of a men's group at the Financial Services Forum that I belong to.

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[SPEAKER_00]: It was a business that was very focused on faith, family, and finances, and, you know, in those, you know, that order and everything.

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[SPEAKER_00]: And I thought, but you do sit around and can't fire trying to figure out who's got the Grizzly as beard and who has the biggest kill.

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[SPEAKER_00]: That's not me.

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[SPEAKER_00]: Did that for about a year and a half,

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[SPEAKER_00]: If society doesn't encourage men to state their insecurities or uncertainties, generally speaking, how much more would that apply in our community for those of us that are caregivers?

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[SPEAKER_00]: So I created it thinking I was going to do this great thing for other people and I'd be good for me too and I'd get something out of it.

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[SPEAKER_00]: And I realize now,

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[SPEAKER_00]: more than ever that it is as much for me as it is anybody else.

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[SPEAKER_00]: The guys that are in the group including Maurice just think I'm so blessed to have to have that.

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[SPEAKER_00]: And so we meet by weekly on zoom registration is free and then link in be found in the show notes as well as at the website.

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[SPEAKER_00]: So let's talk about what does autism mean to you?

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[SPEAKER_00]: So each April I will usually make several posts

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[SPEAKER_00]: knowing that each situation is different based on each person's perspective, but, you know, what made me think about it quite frankly was this week's call for the dead, and one of the dads said, when we were talking about, as we recorded this, this is the Wednesday after this year's Super Bowl, and we were talking about the Super Bowl and

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[SPEAKER_00]: bad bunnies performance and inclusion versus exclusion and all these different things.

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[SPEAKER_00]: And we're talking about inclusion with regard to different communities and one of the dads in the group talked about when we talked about inclusion in terms of what a portrayal of special needs or autism looks like in film.

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[SPEAKER_00]: One of the dads said,

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[SPEAKER_00]: You know, he says, you know, I think that the pictures are so rosy and they they'll throw some challenges, but they're very minimal and it doesn't get to the ugly of it.

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[SPEAKER_00]: So it almost seems fake and less than genuine despite the intention.

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[SPEAKER_00]: And so with that said I want us to begin with.

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[SPEAKER_00]: as real as we can.

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[SPEAKER_00]: We're going to talk about the good, the bad and the ugly.

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[SPEAKER_00]: And with each topic, we're going to have subtopic.

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[SPEAKER_00]: So the first thing we're going to talk about is the ugliest of challenges.

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[SPEAKER_00]: And so I'm just not running my mind going, Maurice, I'll let you go first.

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[SPEAKER_00]: But we'll talk about the ugliest or scariest, the worst of autism.

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[SPEAKER_00]: When we talk about what it means to you.

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[SPEAKER_00]: and we'll get to the good stuff too because we want to close up with that so that we can offer hope.

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[SPEAKER_00]: Our intention is to make sure that you feel that you're not alone.

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[SPEAKER_00]: What would you say Maurice, based on your experience as a father to a young adult male with autism, is what's the ugliest?

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[SPEAKER_01]: Talk about the ugliest parts based on your experience?

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[SPEAKER_01]: You know, we all have dreams for our kids, right?

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[SPEAKER_01]: And, and hopes and dreams and things that we think we'd love for them.

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[SPEAKER_01]: And having to adjust those dreams and those visions with a diagnosis is hard.

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[SPEAKER_01]: I don't know how to say it.

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[SPEAKER_01]: It's, for me, it's taking many years to process that.

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[SPEAKER_01]: It's taking kind of, um,

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[SPEAKER_01]: of different series of sadduses.

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[SPEAKER_01]: I mean, my son is an amazing blessing to me, so don't get me wrong.

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[SPEAKER_01]: But we're talking about the ugly and some of the ugly is, I don't have a neurotypical child.

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[SPEAKER_01]: They're not going to have a neurotypical development.

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[SPEAKER_01]: They may never achieve some of the things that we wish for our children.

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[SPEAKER_01]: And so that's, that's a, it's a, we process.

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[SPEAKER_01]: It's a difficult problem about ugly,

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[SPEAKER_01]: to go through emotionally, mentally and, you know, come out the other side of it.

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[SPEAKER_01]: So when you say ugly, that's kind of the first thing that strikes me is right after diagnosis.

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[SPEAKER_01]: Of course, you want to jump in and do all these crazy therapies and and hope you get your, your kid back as close to neurotypical in development behaviors possible, but all diagnosis are different.

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[SPEAKER_01]: So that may be possible for some.

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[SPEAKER_01]: of what struck me as ugly.

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[SPEAKER_01]: Now, there's this all kinds of things.

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[SPEAKER_01]: You know, my son probably really wasn't potty trained until four or five.

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[SPEAKER_01]: And for a while there, he used to like go hide behind the one of the couches in my office and take it down.

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[SPEAKER_01]: And this is that age.

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[SPEAKER_01]: This is that age three or four, right?

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[SPEAKER_01]: And it's like, right.

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[SPEAKER_01]: Oh, my God.

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[SPEAKER_01]: So we've never talked about that.

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[SPEAKER_01]: No.

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[SPEAKER_01]: So, um,

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[SPEAKER_01]: That's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the one that's the

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[SPEAKER_01]: It's like, you know, the work, the work was, you know, not fun, but I was very great.

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[SPEAKER_01]: And that mission has lasted to this day, so it was, it was it was well worth whatever, whatever many money I spent on it a thousand times.

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[SPEAKER_01]: So, yeah, I mean, it's not so much.

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[SPEAKER_01]: Yeah.

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[SPEAKER_01]: So, that's one of them, we, we, we have this thing called, um,

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[SPEAKER_01]: fuzzy garnishes and so my son also loved the eat apples and they throw them under furniture like under couches and stuff and you would know the core that is right and then yeah and then you'd be like you know you see something and you pick up and then there'd be this big pile of green mold you know or maybe whatever it is and it was really an apple core and you're like oh my god so it was just that man yeah when you said fuzzy ganish I was thinking of a product

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[SPEAKER_00]: Who came to that turn?

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[SPEAKER_01]: We, I don't know.

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[SPEAKER_01]: I have five kids, so they come over and they've forgotten.

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[SPEAKER_01]: It sounded so official.

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[SPEAKER_01]: Yeah, no, we call it.

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[SPEAKER_01]: We call it, oh, here's another fun.

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[SPEAKER_01]: You can dish that.

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[SPEAKER_01]: It's like, oh, God, I got to go clean that up.

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[SPEAKER_01]: So, you know, there's that kind of stuff.

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[SPEAKER_01]: And, you know, we're in it.

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[SPEAKER_01]: It's not so funny years later, it's hilarious, right?

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[SPEAKER_01]: Like, you know, my kid taking at four taking a dump behind a couch.

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[SPEAKER_01]: It's funny now, not fun, then, right?

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[SPEAKER_00]: So just the way he said it, well, yeah, it's just one and you do have to laugh at it.

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[SPEAKER_00]: There you go.

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[SPEAKER_00]: I'm laughing thinking in the middle of it, I would just be, because I know with puppies how that's happened.

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[SPEAKER_00]: You know, we're just like, why do I need to find out by way of odor?

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[SPEAKER_00]: Like it's one thing up my sea, but if it just sneaks up, like, why did you do that?

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[SPEAKER_00]: I'll explain it as such, what I came up with is the ugliest and then the best and the most hopeful, right?

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[SPEAKER_00]: And under each category, so under each category, there's a sub-category, so we'll look at social, they have fixed on your relationship with relationships with your children, effects on your marriage, effects upon yourself, and then effects upon the way you view society.

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[SPEAKER_00]: And we're going to look at those things, but

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[SPEAKER_00]: both as it relates to the ugly and the pretty or the hopeful.

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[SPEAKER_00]: The two things, the three things I've touched on have nothing to do with that, but okay, we'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and I'll try and

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[SPEAKER_00]: You said four or five, I was like, I think Elijah might have been out.

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[SPEAKER_00]: You might have been seven or eight or something.

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[SPEAKER_00]: I don't know, because you know what's interesting, what's interesting about what autism teaches you, especially, I'm sure we'll apply with any diagnosis, at least I think, is that that which seems like a mountain to overcome or one that will always be there,

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[SPEAKER_00]: Once you get past it, you never forget the struggle, but in some ways, the struggle seems like yesterday, yet so very far away, because in life generally speaking, especially in this day and age with technology, we're just so inundated, it's a challenge to be present, right?

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[SPEAKER_00]: And so I shouldn't say that, it's a challenge to be,

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[SPEAKER_00]: to stop and think about how far you've come, because you are so present, I should say.

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[SPEAKER_00]: You're still locked into, especially as a caregiver, you're on watch duty like the whole time.

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[SPEAKER_00]: And so,

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[SPEAKER_00]: It's more of a challenge to stop and sit and reflect upon how far you've come.

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[SPEAKER_00]: And if you go, oh gosh, you have to remember where he never did such and such.

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[SPEAKER_00]: I never thought that would take place and you're so used to it.

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[SPEAKER_00]: So I think he might have been, he might have been even six or seven.

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[SPEAKER_00]: I don't know when he stopped wearing the pull-ups.

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[SPEAKER_00]: So he didn't, so was Isaac wearing pull-ups for a while and what he would do is just take the pull-up off and go.

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[SPEAKER_00]: Yes.

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[SPEAKER_00]: Okay.

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[SPEAKER_00]: Yeah, and that's where you don't know what would take place because Elijah never took him off.

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[SPEAKER_00]: He just, he had a matter of fact.

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[SPEAKER_00]: He, his thing around the house was the pull-ups and a t-shirt.

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[SPEAKER_00]: Kind of like the way a kid, you know, a toddler would have a diaper and a t-shirt for the longest time.

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[SPEAKER_00]: And so that's part of the ugly.

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[SPEAKER_00]: Let's go to the so-category of the social.

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[SPEAKER_00]: I would say,

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[SPEAKER_00]: Um, I think it's the social, the first time there was any issue with a lotment.

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[SPEAKER_00]: He, we had moved into this house that we were renting.

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[SPEAKER_00]: And, um,

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[SPEAKER_00]: Everybody was kind of doing their own thing.

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[SPEAKER_00]: We hadn't been there that long.

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[SPEAKER_00]: And he, nobody kind of knew where he was.

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[SPEAKER_00]: But I was the one that didn't notice.

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[SPEAKER_00]: And I was just, and I asked his sister, I was like, where's Elijah?

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[SPEAKER_00]: And he was like, I thought he was with you.

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[SPEAKER_00]: Like, okay.

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[SPEAKER_00]: And there's a gate on either side of the house that goes to the backyard.

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[SPEAKER_00]: And one of them, you know, you have one gate that kind of becomes your designated gate in and out of the backyard.

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[SPEAKER_00]: And there's one that you're just almost never go through.

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[SPEAKER_00]: We hadn't even put a lock on that one yet, and it was wide open, so I go through it and I'm walking out to the front of the house casually, and there's a guy walking up the street holding our eyes just hand.

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[SPEAKER_00]: And at this point he was, let's see, he's born in a six or a talk about.

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[SPEAKER_00]: He was that

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[SPEAKER_00]: three or four maybe.

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[SPEAKER_00]: At a time where he should be completely verbal.

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[SPEAKER_00]: And as a guy's walking up the street when I walk in towards the guy like, just kind of dump on it, the guy says, yeah, he was here on, you know, a major thoroughfare in, in, uh,

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[SPEAKER_00]: in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in, in,

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[SPEAKER_00]: I just didn't know what to say.

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[SPEAKER_00]: So we came, you know, got him back in, we're not got a lot right away.

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[SPEAKER_00]: And, you know, and then we had one other instance where the same thing took place.

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[SPEAKER_00]: And I guess this is social as well.

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[SPEAKER_00]: Where he just wasn't around.

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[SPEAKER_00]: Like, kind of, where is he?

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[SPEAKER_00]: And something told me to go to the backyard.

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[SPEAKER_00]: And so I did.

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[SPEAKER_00]: And then something told me to stand for a second and listen and I did because he wasn't responding to anybody's calls.

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[SPEAKER_00]: And as I stood still and listened, I could hear over the fence like a struggle.

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[SPEAKER_00]: I'm going over the fence.

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[SPEAKER_00]: And for those of you that are on any, you know, that are viewing on YouTube, you'll see my hand is right at my chest.

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[SPEAKER_00]: I look over the fence and he's in the neighbor's pool.

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[SPEAKER_00]: up to his chest with the water rising because he's trying to avoid going into the deep and the knees on his tiptoes and my goodness.

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[SPEAKER_00]: I really don't remember going over the fence.

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[SPEAKER_00]: I just remember being over the fence, right?

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[SPEAKER_00]: And we didn't know the neighbors, well, at all didn't know if they had dogs or whatever, and it turns out they did, but they were in the house and they were barking up a storm.

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[SPEAKER_00]: And I just went in fully cloth, got him out of the pool and sister came out.

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[SPEAKER_00]: I put him over the fence and

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[SPEAKER_00]: I lost a portion of my shin in the form of skin, so it was like blood and Laura got him in the tub and everything got his clothes off and I was just like, I'm in.

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[SPEAKER_00]: Yeah.

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[SPEAKER_00]: just in the moment.

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[SPEAKER_00]: And I just sat there and probably lost like five pounds of water waiting in the form of tears just like all of a sudden because I was thinking what if I was not at home.

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[SPEAKER_00]: He would have drowned for certain.

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[SPEAKER_00]: So that's probably the ugliest thing.

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[SPEAKER_00]: And we think about social.

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[SPEAKER_00]: It's funny.

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[SPEAKER_00]: The value of that puts things in perspective because from there on

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[SPEAKER_00]: I think the ugliest things from a social standpoint had to do with me caring too much about what other people thought or or him being aware of people staring at him.

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[SPEAKER_00]: We had a conversation the other day where you were telling me actually we were talking about on our call last night for the day.

17:47.120 --> 17:49.403
[SPEAKER_00]: You were talking about a moment with

17:49.788 --> 18:03.130
[SPEAKER_00]: family and prayer and I think of it and being concerned about as they go around each person says with a thankful for you, we're worried about Isaac and I asked you were you worried about how it would look or what people would think?

18:03.611 --> 18:04.373
[SPEAKER_00]: Was it about you?

18:04.393 --> 18:04.994
[SPEAKER_00]: Was it about him?

18:05.014 --> 18:07.037
[SPEAKER_00]: You're like, oh no no you were really worried about

18:07.473 --> 18:13.682
[SPEAKER_00]: him and I think that's great because in my case, at least think that Elijah is not necessarily as aware.

18:13.842 --> 18:18.248
[SPEAKER_00]: So Mike is more like, or had been, how does that look, how does that look?

18:19.069 --> 18:25.458
[SPEAKER_00]: I still think I cure too much for other people think, but my concern at this point is more protective than he knows.

18:25.478 --> 18:27.000
[SPEAKER_00]: I don't want him to feel bad.

18:27.521 --> 18:28.081
[SPEAKER_00]: Right.

18:28.562 --> 18:29.503
[SPEAKER_00]: Right.

18:29.523 --> 18:33.008
[SPEAKER_00]: Talk about your ugly when it comes to social aspect.

18:35.283 --> 18:53.518
[SPEAKER_01]: Well, you know, there's always, we are human, we do have egos, we, I think that's kind of what drives so much as social media is people are trying to project an image of their life that's maybe not exactly accurate because our egos are what they are, right?

18:54.019 --> 19:05.188
[SPEAKER_01]: So then we find ourselves in these situations where our kids are not neurotypical and that becomes evident from whatever reason they're stimming, they're making noise, they're screaming, they're having them melt them, whatever

19:05.405 --> 19:18.822
[SPEAKER_01]: I think it's very hard for any of us as humans to let go of concern for what other people think, but over time, you just start to realize these events kind of mean nothing to the people around.

19:18.902 --> 19:22.847
[SPEAKER_01]: They don't first of all, they don't care about people, but they mean nothing to my life, right?

19:23.788 --> 19:32.880
[SPEAKER_01]: Whether they're looking judgmentally, whether they're annoyed, what differences they make, we're in this space together as humans for five minutes or ten minutes, and then

19:33.367 --> 19:35.389
[SPEAKER_01]: they're off to their life and I'm off to my life.

19:35.449 --> 19:37.851
[SPEAKER_01]: So I think I've come to that realization.

19:37.911 --> 19:47.641
[SPEAKER_01]: It really has released me from being concerned about what people think of my son and the the weird gestures he's making with his hand or the noises he's making.

19:47.681 --> 19:50.844
[SPEAKER_01]: So but that was a process.

19:50.864 --> 19:57.570
[SPEAKER_01]: And one of the things I thought for anybody who's listening to this, I want to acknowledge that when you're in it, you don't know when it's going to end.

19:58.110 --> 20:02.935
[SPEAKER_01]: And some of this hard,

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[SPEAKER_01]: Right.

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[SPEAKER_01]: And I can almost assure the answer is no.

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[SPEAKER_01]: I mean, will my kid have autism forever?

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[SPEAKER_01]: Yes.

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[SPEAKER_01]: Will the manifestations that come out in his life that are difficult to handle last forever probably not?

20:18.768 --> 20:22.974
[SPEAKER_01]: You know, most, well, maybe I shouldn't say that.

20:22.994 --> 20:29.142
[SPEAKER_01]: My experiences is that these things like, for example, when my son was going to the bathroom on the carpet,

20:29.645 --> 20:34.212
[SPEAKER_01]: It felt like will this ever end, because this, I don't love this task.

20:34.312 --> 20:35.394
[SPEAKER_01]: It's hard.

20:35.494 --> 20:36.576
[SPEAKER_01]: It's gross.

20:38.399 --> 20:39.140
[SPEAKER_01]: But it ended.

20:39.381 --> 20:46.412
[SPEAKER_01]: And so many of the other things that I worried about when he was little and then at seven, eight, nine, ten, and 11, 12, 13, 14.

20:46.913 --> 20:50.839
[SPEAKER_01]: So many things I worried about will it, you know, am I going to have to do with this forever?

20:50.879 --> 20:51.720
[SPEAKER_01]: I haven't had to.

20:51.840 --> 20:57.289
[SPEAKER_01]: So I just want to kind of put that

20:57.708 --> 21:08.826
[SPEAKER_01]: I understand that when you're in it, if you don't know when it's going to end and it feels like forever and it can be mentally and emotionally draining, but this too shall pass as the old thing.

21:08.866 --> 21:10.869
[SPEAKER_01]: Took the worst right out of my mind.

21:10.889 --> 21:11.631
[SPEAKER_00]: I was thinking that.

21:11.651 --> 21:11.871
[SPEAKER_00]: Yeah.

21:12.151 --> 21:12.472
[SPEAKER_00]: Yeah.

21:12.492 --> 21:12.973
[SPEAKER_00]: Yeah.

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[SPEAKER_00]: Yeah.

21:14.836 --> 21:24.812
[SPEAKER_00]: And you were at my mind and more or the night because I was thinking that, you know, for somebody that's listening and new to a diagnosis or going through something where they feel alone because we created this platform.

21:25.332 --> 21:27.714
[SPEAKER_00]: to remind people that they are not alone.

21:28.075 --> 21:39.747
[SPEAKER_00]: And now more than ever in this world than in this country, especially we need to be reminded of the things that we have in common, as opposed to otherwise, because there are so many things taking place that seek to divide us.

21:40.347 --> 21:44.091
[SPEAKER_00]: And we just want to let people know that they're not alone.

21:44.652 --> 21:50.698
[SPEAKER_00]: And it goes back to what I was saying before, when you think back about certain things that they may have done or

21:51.421 --> 21:52.863
[SPEAKER_00]: didn't do that.

21:53.303 --> 22:03.837
[SPEAKER_00]: Now I just, you know, completely flipped those things take place and I understand too that it's more of a challenge if you're not part of a team and you're a single parent.

22:04.397 --> 22:09.544
[SPEAKER_00]: But the progress is there and you have to take each day one day at a time.

22:09.644 --> 22:19.116
[SPEAKER_00]: It's as true as it sounds

22:19.383 --> 22:32.496
[SPEAKER_00]: The ugly part from a social standpoint is we just say that our ugly from a social standpoint dealt with how other people might think and little in ideocincrecies is stimming and stuff like that.

22:32.856 --> 22:46.690
[SPEAKER_00]: There are people out there who have situations that neither one of us have experience that are full blown Gargantuan ugly to the poor, maybe they can't take their child to the store and you know things like that and we want them to know also that they are not alone.

22:47.598 --> 22:59.754
[SPEAKER_01]: Yeah, I want to acknowledge that because I am aware of a family whose son now is I think he's 16 and he is now kind of in CPS services because he was.

23:01.536 --> 23:14.012
[SPEAKER_01]: He had very violent tendencies towards his little brother and so they as a family are kind of heartbroken right now because he's he's not in their home anymore and that was more driven out of the protection for their younger son.

23:14.072 --> 23:15.394
[SPEAKER_01]: Right.

23:15.745 --> 23:20.435
[SPEAKER_01]: And their older son could not control those violent tendencies.

23:20.496 --> 23:23.242
[SPEAKER_01]: So it's a heartbreaking situation.

23:23.302 --> 23:28.133
[SPEAKER_01]: And I don't want to undersell the realities that are out there.

23:28.373 --> 23:30.658
[SPEAKER_01]: And it is called a spectrum for a reason.

23:30.678 --> 23:32.843
[SPEAKER_01]: There are those kids who are.

23:33.785 --> 23:44.221
[SPEAKER_01]: can go to regular school and with some support graduate and go on to college there are some kids who are semi-verbal and the idea of college is probably not on the horizon.

23:44.281 --> 23:59.404
[SPEAKER_01]: There are some kids who are nonverbal and then there are kids who have all manner of manifestations out of the autism diagnosis and we hear one acknowledge it all and never want to pretend that

23:59.857 --> 24:01.318
[SPEAKER_01]: We understand it all.

24:01.358 --> 24:02.259
[SPEAKER_01]: We faced it all.

24:02.299 --> 24:03.560
[SPEAKER_01]: That's not what we're here for.

24:03.621 --> 24:06.543
[SPEAKER_01]: We, you know, we love this community.

24:06.603 --> 24:11.948
[SPEAKER_01]: And I know Sean's hoping my hope is that these talks are an encouragement to keep going.

24:11.968 --> 24:16.052
[SPEAKER_01]: Um, because there's a lot of beautiful things that come.

24:16.332 --> 24:19.816
[SPEAKER_01]: And we, I guess we're going to talk about that on the back of our conversation today.

24:19.876 --> 24:26.742
[SPEAKER_01]: But yes, we just want acknowledge that

24:26.941 --> 24:41.978
[SPEAKER_00]: Yes, and in one of our previous episodes, our good friend and fellow co-hosts, Susanna Pieslevel, I think you and Susanna are really, we're talking about, I think you might have been the first episode where we were talking about what this is, is that none of us are experts.

24:41.998 --> 24:43.840
[SPEAKER_00]: We're not here to tell people what to do.

24:43.860 --> 24:50.788
[SPEAKER_00]: The closest we will get to that is to say, here's my experience, here's what I did, and it worked.

24:50.768 --> 25:04.801
[SPEAKER_00]: For me, if that's something that you want to try, feel free and if you have something to say that is contrary to my experience, by all means tell me so that other people know they're not alone and we have the opportunity to learn from that too.

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[SPEAKER_00]: Absolutely.

25:06.024 --> 25:07.427
[SPEAKER_00]: And speaking of which,

25:07.795 --> 25:15.849
[SPEAKER_00]: You can reach out to us by email at change the world at beyond the spectrum podcast.com.

25:16.230 --> 25:23.442
[SPEAKER_00]: I know that's a mouthful, but it is change the world at beyond the spectrum podcast.com.

25:23.422 --> 25:33.733
[SPEAKER_00]: Okay, so moving on, let's not talk about still sticking with the ugly, the next subcategory being how autism has affected your relationship with your other children.

25:33.773 --> 25:47.607
[SPEAKER_00]: And I know that there's people listening that may have just one child and, you know, a situation is different, but for those of us who have several children and one who is

25:47.587 --> 25:55.137
[SPEAKER_00]: neurodivergent, there are ways in which the other chosen are affected and a variety of them.

25:55.438 --> 26:05.772
[SPEAKER_00]: One being having to acknowledge you as a parent that you may love differently, but you don't want that to be received as loving more or less.

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[SPEAKER_00]: Want you to go first on that?

26:09.137 --> 26:14.184
[SPEAKER_01]: Yeah, I guess my young step five, so I have three girls first and then two sons.

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[SPEAKER_01]: Again, I

26:17.050 --> 26:42.433
[SPEAKER_01]: You know, it's been a challenge there because he requires a level of kind of patience and acceptance of kind of out of the box Accepted behaviors for neurotypical children and that's been hard for some of my kids when they were younger especially like why Basically why are you giving into Isaac when it comes to this and this but when it was me I didn't I didn't get that kind of

26:43.190 --> 26:51.820
[SPEAKER_01]: I didn't get that kind of grace or that space to include some of the behaviors in the way I was, where that wasn't accepted.

26:51.860 --> 27:04.755
[SPEAKER_01]: It's like, well, when they're younger, it's very hard to explain to them why, as an autistic person, you have to pick your battles, because you can't be fighting your child 24, 7, 3, 65.

27:04.775 --> 27:12.724
[SPEAKER_01]: You're going to accept some of these things that cannot be controlled and they're

27:13.092 --> 27:16.676
[SPEAKER_01]: But they're not, you know, they're not life-threatening, they're not dangerous.

27:16.797 --> 27:25.788
[SPEAKER_01]: And that, you know, you know, I have five kids that will have very unique personalities and very unique views on life.

27:27.410 --> 27:34.659
[SPEAKER_01]: Some of them are like my youngest daughter, who is the middle of the five children, she is incredibly close to Isaac.

27:34.679 --> 27:38.644
[SPEAKER_01]: And she just has a heart of compassion and empathy and patience.

27:38.684 --> 27:40.306
[SPEAKER_01]: And she's amazing with him.

27:40.386 --> 27:42.188
[SPEAKER_01]: And it's kind of mind-blowing.

27:42.488 --> 27:50.997
[SPEAKER_01]: how she's able to talk him and de-escalate and without her, we would have so much more work on our shoulders.

27:51.538 --> 27:59.366
[SPEAKER_01]: A couple of siblings were like, eh, you know, I'm living my life, you know, I love Isaac, but, you know, got nothing to do with me and everything, right?

28:00.087 --> 28:11.719
[SPEAKER_01]: And so, the ugly part is, I would say, the frustration that a couple of my, a couple of his siblings kind of

28:12.442 --> 28:28.564
[SPEAKER_01]: seem to forget that he has autism and they are readily ignored by some of the noises, some of the behaviors, you know, just wish that there would be more compassionate empathy coming out of them towards him and you can make that be the case.

28:29.365 --> 28:35.614
[SPEAKER_01]: And so that's been a point of frustration and a point of disappointment for both myself and my wife.

28:36.083 --> 28:44.096
[SPEAKER_01]: when it comes to a couple of our our children because it just don't seem to get it and they're almost driven by the irritation of it all and that's.

28:45.458 --> 28:46.600
[SPEAKER_02]: Then it's tough too because.

28:46.620 --> 28:47.141
[SPEAKER_00]: That's right.

28:47.902 --> 28:52.689
[SPEAKER_00]: And I'm not just saying that because they're my family and I know them to be good kids are good people.

28:53.551 --> 28:55.594
[SPEAKER_00]: But the truth of the matter is,

28:55.675 --> 29:15.288
[SPEAKER_00]: that's frustrating is disappointing, but this is a certain amount of grace that has to be given because you and I talk about times where we forget and generally speaking, especially from culturally speaking, as a man and then as a black father, you know, rural rays where you just don't talk back to your parents and if you're has to do something, you know, you do that.

29:15.689 --> 29:18.814
[SPEAKER_00]: So when your child who because of their autism,

29:19.013 --> 29:21.099
[SPEAKER_00]: is going to be obstinate.

29:21.500 --> 29:34.795
[SPEAKER_00]: Because of that, not just because there's some disobedient prick of a child, you know, your first instinct, you've got more years as a child than you do as an adult.

29:36.293 --> 29:37.335
[SPEAKER_00]: to one with autism.

29:37.896 --> 29:39.138
[SPEAKER_00]: So what's your go-to?

29:39.759 --> 29:41.022
[SPEAKER_00]: That which you were raised with.

29:41.743 --> 29:44.688
[SPEAKER_00]: And that which you were raised with is like, I said to do so and so.

29:44.708 --> 29:51.561
[SPEAKER_00]: I'm like, you know, more times than not, you're aware that it's autism, but every now and then you'll like, you forget.

29:51.581 --> 29:56.850
[SPEAKER_01]: Yeah, and for me, I'd say in my somewhere in me, it translates into disrespect.

29:57.320 --> 30:05.511
[SPEAKER_01]: And then my response is outsized for whatever the nature of the issue is because it's hit a core thing in me.

30:05.531 --> 30:06.553
[SPEAKER_01]: That's my issue.

30:06.613 --> 30:10.058
[SPEAKER_01]: That's not accurate, but I read it as disrespecting them.

30:10.118 --> 30:14.303
[SPEAKER_01]: I'm like, you know, I'm up and I'm ready to not take that.

30:15.004 --> 30:22.955
[SPEAKER_01]: And fortunately, as I've gotten older with my wife's many at management, I'm like, yeah, you're right.

30:23.016 --> 30:26.280
[SPEAKER_01]: It's not about disrespect.

30:26.598 --> 30:33.327
[SPEAKER_01]: And that then in turn, like he talked about, it leads me to grace for my children because first of all, um, is parrot.

30:33.788 --> 30:39.876
[SPEAKER_01]: It's a very different dynamic as parents towards a neurotypical child versus siblings.

30:39.936 --> 30:41.318
[SPEAKER_01]: They don't have that responsibility.

30:41.338 --> 30:42.320
[SPEAKER_01]: It's not their children.

30:42.360 --> 30:43.822
[SPEAKER_01]: They don't know parental love.

30:44.382 --> 30:56.419
[SPEAKER_01]: So I have to be really careful not to expect them to be able to look at him the way I do or you have the levels of patients or understanding or kindness that I do

30:57.108 --> 30:58.740
[SPEAKER_01]: very different than he's there simply.

30:59.344 --> 31:01.802
[SPEAKER_01]: So, yeah, that's what we have to do.

31:02.288 --> 31:10.297
[SPEAKER_00]: Yes, and that's why we can never stop punting in the clock on the job of raising our consciousness, getting better and evolving.

31:10.357 --> 31:14.141
[SPEAKER_00]: Because without doing that, you're just going to do what you do and be who you are.

31:14.342 --> 31:15.763
[SPEAKER_00]: Well, you know, that's just the way things are.

31:15.783 --> 31:16.764
[SPEAKER_00]: That's the case.

31:16.784 --> 31:18.727
[SPEAKER_00]: Then we shouldn't even have the technology to sit here.

31:19.307 --> 31:25.354
[SPEAKER_00]: You know, so we have to make sure that we're continuously growing and evolving.

31:25.795 --> 31:27.076
[SPEAKER_00]: And each situation is different.

31:27.116 --> 31:30.540
[SPEAKER_00]: So in our case, we have, as you know,

31:30.520 --> 31:31.361
[SPEAKER_00]: Seven children.

31:31.401 --> 31:35.187
[SPEAKER_00]: Elijah is my only biological child.

31:35.367 --> 31:38.111
[SPEAKER_00]: My wife has two daughters from her previous marriage war.

31:40.514 --> 31:46.242
[SPEAKER_00]: I've moved out there in their 30s, which is mind blowing to say.

31:47.684 --> 31:57.338
[SPEAKER_00]: But we also we also first became legal guardians to and eventually adopted my sister-in-law's four children.

31:57.318 --> 32:04.028
[SPEAKER_00]: one of the girls, we're having a conversation the other day.

32:04.068 --> 32:04.529
[SPEAKER_00]: What was it?

32:04.729 --> 32:09.216
[SPEAKER_00]: Oh, she and my wife were going to go someplace.

32:09.236 --> 32:12.822
[SPEAKER_00]: I think it was her classes for college or something.

32:13.643 --> 32:19.452
[SPEAKER_00]: And they were talking about, and it's a community college, you know, not too far away.

32:19.853 --> 32:21.435
[SPEAKER_00]: And they were talking about,

32:21.938 --> 32:31.895
[SPEAKER_00]: She was telling her about what the day was going to entail in terms of registration and everything on that day and my wife is right now especially going to the like a real growth phase.

32:31.915 --> 32:42.192
[SPEAKER_00]: We both are together and so I hope can I try new and so my wife has made a comment really I should check out the classes or whatever and it was just kind of a passing thought.

32:42.172 --> 32:43.794
[SPEAKER_00]: But she thought she was going to go with her.

32:43.814 --> 32:45.596
[SPEAKER_00]: And Elijah had a basketball game on the same day.

32:45.616 --> 32:48.158
[SPEAKER_00]: And he asked my wife to go to the game.

32:48.739 --> 32:51.442
[SPEAKER_00]: Usually I take him to the game, I take him to the practice.

32:51.462 --> 32:53.244
[SPEAKER_00]: And he had asked her from the day before.

32:53.284 --> 32:56.828
[SPEAKER_00]: So she decided that, you know, she's going to go to his game.

32:57.649 --> 33:10.002
[SPEAKER_00]: And when I took her to the registration, just to drop her off, it led to a very open and honest conversation about disappointment and things that she dealt with when she was even

33:10.758 --> 33:16.869
[SPEAKER_00]: younger with regard to different levels of attention that Elijah might need.

33:17.450 --> 33:23.702
[SPEAKER_00]: It was just very honest about how at times she was hurt and she had never said that.

33:23.902 --> 33:29.593
[SPEAKER_00]: So we learned some things about communication too because the other thing I thought was her personality is one that is very, um,

33:31.396 --> 33:47.582
[SPEAKER_00]: She's certain she's um, I don't know if I want to say gruff like what she she's just she's not like touchy feeling and affectionate that kind of thing like I learned from her that When she asks um where I'm going or what time I'm going to be back

33:48.220 --> 33:53.409
[SPEAKER_00]: Especially when she was smaller, that's her saying I love you because we say I love you to each other, like, you know, all of us.

33:54.331 --> 34:03.307
[SPEAKER_00]: She's the last one to adapt to that and because that's just not who she is, but her love language is to ask, you know, are you okay?

34:03.327 --> 34:05.050
[SPEAKER_00]: Did you need anything or where are you going?

34:05.571 --> 34:08.035
[SPEAKER_00]: And so because of that and she seems so certain.

34:08.015 --> 34:16.088
[SPEAKER_00]: I didn't think that she was hurt, despite the fact that we would say to them, look, you do realize he needs these things, a legend needs this and he's that, you know, we love you just the same.

34:16.128 --> 34:23.920
[SPEAKER_00]: And then we would do things individually with them without him, because he gets his one-on-one anyway, just to make sure that to play.

34:23.940 --> 34:29.128
[SPEAKER_00]: So, what really aware that she had felt

34:29.108 --> 34:36.377
[SPEAKER_00]: hurt by that because the other thing is she didn't want to, um, she didn't want to, you know, appear.

34:37.138 --> 34:38.199
[SPEAKER_00]: She didn't want to appear.

34:39.962 --> 34:40.843
[SPEAKER_00]: She don't want to be a problem.

34:40.863 --> 34:42.124
[SPEAKER_00]: She don't want to be a person to anyone.

34:42.184 --> 34:44.167
[SPEAKER_00]: So she, so she never said anything.

34:44.588 --> 34:46.810
[SPEAKER_00]: So those things take place.

34:46.830 --> 34:57.664
[SPEAKER_00]: And so for somebody who has more than one child, you know, and has one newer divergent child amongst several of those

34:59.703 --> 35:06.811
[SPEAKER_00]: take for granted that they may be affected by the different level of care that you have to give.

35:07.472 --> 35:12.078
[SPEAKER_00]: Don't take for granted that they don't see that as more love and them getting less.

35:12.739 --> 35:15.962
[SPEAKER_00]: And they may not be aware of it too depending on their age and the situation.

35:17.664 --> 35:19.767
[SPEAKER_00]: Okay, sticking with the ugly next up topic.

35:20.388 --> 35:28.157
[SPEAKER_00]: Talk about how autism, the effects that autism

35:31.512 --> 35:38.301
[SPEAKER_01]: That's a whole other show too, and it's so, yeah, it's good and bad, but we know the challenge is for now.

35:38.922 --> 35:54.342
[SPEAKER_01]: Well, the challenge I think is so much energy is drawn out of you in vigilance and care for a neurodivergent child that it leaves less space and energy for your marriage, but that's kind of the reality.

35:55.704 --> 36:01.131
[SPEAKER_01]: Or so much of that energy is about partnering to care for

36:01.381 --> 36:05.688
[SPEAKER_01]: that it's really almost kind of not about you two relating to one another.

36:05.788 --> 36:17.586
[SPEAKER_01]: It's, you know, you're partnered in this enterprise of doing as much as you can to bring the richest life you can to this neurodivergent child.

36:18.448 --> 36:25.819
[SPEAKER_01]: And that deflects some of the energy you might have

36:27.166 --> 36:34.332
[SPEAKER_01]: I mean, as we've talked about it, that's why I think a divorce rate for family and community in our communities incredibly high.

36:35.393 --> 36:42.059
[SPEAKER_01]: And then there's just the stress and exhaustion of caring for being a caregiver.

36:42.279 --> 36:47.684
[SPEAKER_01]: It's just parts of it are amazing and parts of it are really hard.

36:48.385 --> 36:56.852
[SPEAKER_01]: And when you're stressed and life feels hard, a lot of times that comes out on your partner,

36:57.254 --> 37:02.162
[SPEAKER_01]: unwillingness to do more being more provide more.

37:02.362 --> 37:05.447
[SPEAKER_01]: You just like, I'm, I got no gas in the tank.

37:06.129 --> 37:12.840
[SPEAKER_01]: So yeah, I think that is incredibly challenging.

37:13.140 --> 37:23.417
[SPEAKER_01]: And I think for many couples, it, it really becomes about the enterprise of raising their kid and it's not even really about your partnership as a couple anymore.

37:23.437 --> 37:24.038
[SPEAKER_01]: It's about

37:25.165 --> 37:27.549
[SPEAKER_01]: comparing as opposed to marriage.

37:28.290 --> 37:34.540
[SPEAKER_01]: So yeah, that's a real, it's very, it feels like it's very hard to get out of that rut.

37:35.261 --> 37:40.169
[SPEAKER_01]: You're going to kind of wear that path when the wheel, the wagon wheels are in the rut and it's really hard to get them up out of the rut.

37:40.850 --> 37:47.781
[SPEAKER_01]: And so I think that can also be a reality for what goes on in the

37:47.980 --> 37:53.790
[SPEAKER_00]: Yeah, and because that's just be real about it, you know, if you talk about the list of things, what is it that takes place?

37:54.472 --> 37:55.293
[SPEAKER_00]: What is it challenge?

37:55.313 --> 37:59.661
[SPEAKER_00]: And each situation is different based on the diagnosis based on how it plays out.

38:01.624 --> 38:08.777
[SPEAKER_00]: You know, let's just be real and talk about like your fire, your romance, your heat, so to speak, right?

38:08.797 --> 38:09.418
[SPEAKER_00]: Your passion.

38:10.821 --> 38:11.963
[SPEAKER_00]: You know, your...

38:13.124 --> 38:28.180
[SPEAKER_00]: sexual whatever's you know you just you're just like you're you're so that in addition to like you said just a connecting park right because there was anything necessarily sexual about a date night where you go to a movie or you have a meal and you sit down and look at each other just

38:28.480 --> 38:52.665
[SPEAKER_00]: Connect, right, but all of that is what gets tested, you know, every last bit of it and the thing about that is that when something is blatantly ugly, you know, there's holds, if it's a face, there's busted lip teeth missing black eye or whatever have you if it's a car, there's dense, you know,

38:52.645 --> 39:13.544
[SPEAKER_00]: Rust or whatever have you that's you know a house that's dilapidated the roof caved in whatever I mean that's obvious ugly, you know, but then this death of a thousand cuts, right where there isn't a dent Scratch one scratch leads to two to three to four, you know, so Those are things that you know make that happen and again.

39:13.584 --> 39:20.290
[SPEAKER_00]: We're so busy each situation is different but when you're caregiving You're just like in it

39:20.557 --> 39:32.651
[SPEAKER_00]: a challenge to look outside and step back for a second, you know, you heard me talk about, you know, before Einstein had a saying that said, you know, we can't solve the problem at the same level of consciousness at which it occurs.

39:33.112 --> 39:37.176
[SPEAKER_00]: So you're in the eye of the storm, if you're not able to step out of you now, and then you don't even know what you're dealing with.

39:38.117 --> 39:42.543
[SPEAKER_00]: So that's where those things, you know, come up and we've we've had those challenges too.

39:42.583 --> 39:47.188
[SPEAKER_00]: I think what's what's helped us will talk about that as we get to when we get to it.

39:47.388 --> 39:55.519
[SPEAKER_00]: the pretty or the solution, but that's where the challenges come in, especially for men and women depending on how you're raised.

39:55.540 --> 40:12.163
[SPEAKER_00]: And for you and I talking about being raised by black men, who you don't, you don't talk back and you do as you told, you know, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you're, you

40:12.380 --> 40:20.731
[SPEAKER_00]: when they get married, or before they get married, and they start dating, do they have any idea what their parenting style might be?

40:20.911 --> 40:27.840
[SPEAKER_00]: Now, you don't know until you have children, but you have an idea as to how you would raise a child where you're raised.

40:27.860 --> 40:35.890
[SPEAKER_00]: You're either going to do as you experienced as a child or you're determined to do the exact opposite.

40:35.870 --> 40:55.778
[SPEAKER_00]: where that you're parenting language for lack of a better term, if that language is not the same as your partner, or your spouse, or you can't identify that it's different, and plug and play the strengths versus the weaknesses, then you have conflict right there.

40:56.659 --> 40:57.120
[SPEAKER_01]: Absolutely.

40:57.761 --> 41:01.506
[SPEAKER_01]: You kind of talked about fire.

41:01.958 --> 41:12.635
[SPEAKER_01]: You know, for years, for long stretches, sometimes we had a cotton in our room where Isaac stayed, and so really hard to stir up some fire when your kids right there in the cotton exit of your bed.

41:12.655 --> 41:22.431
[SPEAKER_01]: It's like, yeah, you know, there are, and I'm sure this is why I brought up, I'm sure it's a reality for other homes with autism,

41:22.833 --> 41:33.516
[SPEAKER_01]: Yeah, you end up sharing your room with your kid because either you don't have enough bedrooms or, you know, they are, you know, hard to get them to go down at night and that kind of thing.

41:33.556 --> 41:38.547
[SPEAKER_01]: So, yeah, it is, it is not an easy

41:39.640 --> 41:41.582
[SPEAKER_01]: It's not an easy task.

41:41.642 --> 41:41.902
[SPEAKER_01]: Yeah.

41:41.962 --> 41:44.064
[SPEAKER_01]: Try and stay connected to the midst of it all.

41:44.084 --> 41:45.166
[SPEAKER_00]: So yeah.

41:45.206 --> 41:49.950
[SPEAKER_00]: And our situation has been absolutely no different.

41:50.010 --> 41:52.433
[SPEAKER_00]: Like you said, we can do a whole show on that.

41:53.113 --> 42:06.627
[SPEAKER_00]: But just because of an, I'm an optimist before we get to the pretty, what I will say is that, you know, on one hand, these things challenge our, you know, marriages and relationships in our community, so much more so on the other hand.

42:07.433 --> 42:13.187
[SPEAKER_00]: there's the capacity to strengthen because it's going to challenge it, but eventually challenging it is a guarantee.

42:13.648 --> 42:14.831
[SPEAKER_00]: That's not negotiable.

42:15.493 --> 42:19.924
[SPEAKER_00]: But whether it strengthens it or breaks it irreproably,

42:20.697 --> 42:28.924
[SPEAKER_00]: is a different story and one of those two things will take place because it can also strengthen that situation depending on what your foundation is, you know?

42:29.585 --> 42:29.785
[SPEAKER_00]: True.

42:30.446 --> 42:30.886
[SPEAKER_00]: True.

42:31.186 --> 42:31.366
[SPEAKER_00]: True.

42:31.547 --> 42:35.230
[SPEAKER_01]: Or it can be true at one time and not true at another time.

42:35.350 --> 42:42.896
[SPEAKER_01]: So there are exactly right where strength and your relationship and then at another point in time might be breaking it down.

42:43.017 --> 42:46.299
[SPEAKER_01]: So we are ever in motion, right?

42:46.339 --> 42:50.383
[SPEAKER_01]: Time is always being forward and we are always aging and we are always

42:50.363 --> 42:58.595
[SPEAKER_01]: And we are always being hit by good and bad things in life, so it is the thing is, it's never static.

42:58.615 --> 42:58.776
[SPEAKER_01]: No.

42:59.617 --> 43:00.098
[SPEAKER_00]: Yeah.

43:00.118 --> 43:09.252
[SPEAKER_00]: And it's something to keep in mind too, as you're saying that, in that, so if you're in a situation where let's say it's not the best and it's being challenged, if you can stick it out.

43:09.372 --> 43:15.000
[SPEAKER_00]: If you first of all know what you have, and again, what I'd experts, this is just, you know, lower and I've been married for 20 years.

43:15.020 --> 43:16.843
[SPEAKER_00]: How many years are you on floor and tap marries?

43:17.785 --> 43:20.990
[SPEAKER_01]: 30, 36, or yeah.

43:21.251 --> 43:21.812
[SPEAKER_01]: Okay.

43:21.832 --> 43:33.752
[SPEAKER_00]: So we're not pros, we're not experts, not better than anybody else, but if you can have a marriage challenged by it and you're able to be together and neither one of us is in a marriage that is, you know,

43:34.171 --> 43:35.434
[SPEAKER_00]: stick together for the kids.

43:35.475 --> 43:36.738
[SPEAKER_00]: This is miserable what we're here.

43:36.778 --> 43:40.989
[SPEAKER_00]: We're happy with our lives and blessed and grateful for them.

43:41.671 --> 43:45.060
[SPEAKER_00]: And each feel like we just live these amazing lives because of them.

43:45.522 --> 43:50.475
[SPEAKER_00]: And you don't get to that point unless you realize

43:50.725 --> 44:02.696
[SPEAKER_00]: and know what you have in terms of a foundation, knowing that and remembering who you're with as well as who you are is what allows you to face the unforeseen because you don't know what's around the corner.

44:04.317 --> 44:18.150
[SPEAKER_00]: So talk about, if we can obviously, time is creeping up on us, the effects against thinking with the ugly, the effects upon yourself that being a caregiver, is that?

44:18.890 --> 44:26.718
[SPEAKER_01]: there was a time when I started to lose hair and I could have taken monoxidil or any of those other things but Isaac, my son, loves to kiss the top of my head.

44:26.778 --> 44:37.289
[SPEAKER_01]: So I did not have the opportunity to take advantage of that therapy to keep my hair because I didn't want him growing hairy lips because he was always kissing the top of my head.

44:37.309 --> 44:46.618
[SPEAKER_01]: I sit bald here today because one of the ugly things is I couldn't do any kind of hair loss treatments because I didn't want my son to end up with hairy lips.

44:46.598 --> 44:52.448
[SPEAKER_00]: I was like, Harry lips, I was like, oh, you mean putting them a Knoxville on his lips?

44:52.609 --> 44:53.911
[SPEAKER_01]: And then it did it exactly.

44:54.332 --> 45:03.107
[SPEAKER_01]: So anyway, I had to just accept going bald and that's just the way it's gonna be because my son's health came first over my bad at me.

45:03.588 --> 45:08.657
[SPEAKER_01]: So that's a thing, I thought it's kind of silly,

45:08.840 --> 45:11.143
[SPEAKER_01]: Yeah, it's nothing that I was kind of touched on.

45:11.163 --> 45:15.388
[SPEAKER_01]: It's like, it was just a reality of it as I couldn't do that because I love this kiss.

45:15.408 --> 45:18.952
[SPEAKER_01]: I love his attention, but, you know, it would be nice to have here.

45:20.013 --> 45:26.060
[SPEAKER_00]: Well, I think this reveals, though, in some categories or some categories, you can go on and on and on.

45:27.162 --> 45:31.407
[SPEAKER_00]: In others, it's fairly short and quick and simple, and they'll list this short.

45:31.627 --> 45:35.151
[SPEAKER_00]: And so that says a lot about where one is at because

45:35.941 --> 45:40.489
[SPEAKER_00]: is that kind of, you know, I mean, would you say that's it?

45:40.729 --> 45:45.898
[SPEAKER_00]: Or is there something else that you could add to the ugly with regard to you?

45:45.918 --> 45:54.372
[SPEAKER_01]: Oh, no, no, no, I mean, there's just there have been

45:55.482 --> 46:04.420
[SPEAKER_01]: Maybe opportunities to go on short trips or plan longer vacations or those kinds of things that were very fortunate.

46:04.460 --> 46:06.565
[SPEAKER_01]: And then again, we have five children.

46:06.625 --> 46:07.927
[SPEAKER_01]: They're all older than Isaac.

46:08.428 --> 46:14.561
[SPEAKER_01]: So my wife and I have been able to take trips and know that he's well cared for here at home while we're not here.

46:14.721 --> 46:16.545
[SPEAKER_01]: So we've been very fortunate in that.

46:16.812 --> 46:31.252
[SPEAKER_01]: But, you know, there have been many, many other opportunities to kind of participate or do things that we had to decline, because, you know, we had an Isaac to be cared for.

46:31.572 --> 46:35.297
[SPEAKER_01]: And, you know, some of those things you miss are can seem disappointing.

46:35.377 --> 46:37.400
[SPEAKER_01]: I don't, you know, it is what it is.

46:37.440 --> 46:38.702
[SPEAKER_01]: It's not the end of the world.

46:38.952 --> 46:42.116
[SPEAKER_01]: But for me, I'm an extrovert, I'm a very social person.

46:42.717 --> 46:54.092
[SPEAKER_01]: And so not being able to take advantage of some of those social opportunities has felt disappointing for me and kind of, you know, getting that well as me can't do all the fun stuff I'd like to do.

46:54.152 --> 47:00.160
[SPEAKER_01]: So that's, again, I am very grateful for my son and I can't say that enough.

47:00.720 --> 47:05.787
[SPEAKER_01]: But if I'm honest, there are things that have come with caring for him that have

47:06.796 --> 47:12.106
[SPEAKER_01]: force me to defer some of the things that I would like to have done or would have, you know, would like to do.

47:12.246 --> 47:14.250
[SPEAKER_01]: So that's the reality.

47:15.132 --> 47:18.017
[SPEAKER_01]: And at times it's hard and sometimes my attitudes ugly about it.

47:18.939 --> 47:24.990
[SPEAKER_00]: If I'm honest, but, um, well, let's say, first of all, I'm looking at the time in realizing that

47:25.780 --> 47:36.372
[SPEAKER_00]: We have a wonderful problem on our hands in that this is going to be a two-part episode because the the pretty and the optimism is going to be in another episode because we don't have enough time for it.

47:36.713 --> 47:50.809
[SPEAKER_00]: But since that's the case, then given an example if you will of how that got ugly with you, as you do that, I'm going to try and think of my own because I'm not sure about that, you know, where we are.

47:51.211 --> 47:59.743
[SPEAKER_01]: I'll give you a quick example, because I don't get that many social opportunities as I would like.

48:00.705 --> 48:07.915
[SPEAKER_01]: When I do get them, I have this tendency to want to extend it, make it stay longer than I should.

48:07.935 --> 48:18.450
[SPEAKER_01]: And so I'll give you a quick example of my brother invited me out to Indian wells to the

48:18.700 --> 48:47.880
[SPEAKER_01]: and so I went out there and hung out with him and his partner and some of their friends had a you know wonderful day of tennis and all that stuff and then hanging out that night spent the night out there and and I had told my wife I jump on the road, oh sorry, told my wife I was jumping on the road right away in the morning and head back but then my brother's like hey you

48:48.518 --> 48:48.939
[SPEAKER_01]: I do.

48:49.239 --> 49:01.776
[SPEAKER_01]: So I went to breakfast and he showed me a potential property that they were looking at and it ended up stretching out till I didn't end up leaving for home until one in the afternoon, something like that.

49:02.317 --> 49:05.000
[SPEAKER_01]: Meanwhile, I did not was not aware.

49:05.060 --> 49:07.163
[SPEAKER_01]: My wife was sick.

49:07.744 --> 49:09.406
[SPEAKER_01]: My Isaac had diarrhea.

49:09.486 --> 49:10.788
[SPEAKER_01]: It was just a mess, right?

49:10.988 --> 49:17.597
[SPEAKER_01]: And where I would have been here to help care, I was out having a good

49:18.320 --> 49:20.404
[SPEAKER_01]: You know, my wife was upset.

49:20.564 --> 49:36.153
[SPEAKER_01]: I felt terrible because she was sick and then having a care for him as he was sick and it was kind of because I wasn't there because I got greedy for my time away from the house and so that, you know, that's I remember that I feel really bad about it.

49:36.213 --> 49:38.337
[SPEAKER_01]: So that's kind of my

49:40.055 --> 49:48.251
[SPEAKER_01]: my uglyness coming up and my agreed for more coming up and causing a challenge for those around me.

49:48.271 --> 49:52.339
[SPEAKER_00]: So, no, when that happened, because there's two questions I have.

49:52.399 --> 50:01.236
[SPEAKER_00]: One is, did you call it or let it know that John going to be a little later or whatever, and you're like, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no

50:01.570 --> 50:03.792
[SPEAKER_01]: Uh, can I get some grief about that?

50:03.832 --> 50:07.236
[SPEAKER_01]: Yeah, so I was like, no, so then let me ask you this.

50:07.436 --> 50:15.024
[SPEAKER_00]: So you didn't reach out to tell her you were going to be later than you thought and did she reach out to you to tell you like, hey, where are you or anything like that?

50:15.064 --> 50:19.088
[SPEAKER_01]: Yeah, about the time I was because that about the time I should have been getting home, I guess.

50:19.728 --> 50:21.390
[SPEAKER_01]: Well, it's about the time I was getting on the road.

50:21.550 --> 50:24.533
[SPEAKER_01]: So she's like, yeah, where are you and I'm like about to leave.

50:25.314 --> 50:30.379
[SPEAKER_01]: And it's like, oh, really, you know, you can guess where I went from there.

50:31.118 --> 50:35.523
[SPEAKER_01]: Oh, great, because I'm sick and he's sick and it's a mess here and you're not here.

50:35.663 --> 50:47.056
[SPEAKER_00]: So, uh, can I think of an example of that where I just, I don't even know if it's Autism related, but I've just had a couple of situations where I'm just, that's happened.

50:47.897 --> 50:50.200
[SPEAKER_00]: Where I just wasn't as present in my thought or whatever.

50:50.220 --> 50:54.645
[SPEAKER_00]: I as a result have this thing where, you know,

50:55.115 --> 50:57.982
[SPEAKER_00]: My wife is like, self less.

50:58.402 --> 51:05.038
[SPEAKER_00]: Like, if she was super girl, the S wouldn't stand for some, something uncripped on or whatever.

51:05.078 --> 51:07.283
[SPEAKER_00]: It would stand for self less, you know?

51:07.764 --> 51:09.728
[SPEAKER_00]: She's just like, everybody first, everybody first.

51:09.768 --> 51:14.018
[SPEAKER_00]: So if she asked me to move a pebble,

51:14.234 --> 51:36.819
[SPEAKER_00]: I can't move the pebble fast enough, and my thought is like, is the pebble shiny, is the pebble need to be cleaned, is the pebble in the right spot, is it facing the right direction, because that's what she would do, and every now and then she might go, here I got you this, and she'll tell you something, or she won't say anything about it and she'll just do it, and she's just a doer for others.

51:36.899 --> 51:40.663
[SPEAKER_00]: So whenever I have a situation where I have not done that,

51:41.926 --> 51:44.809
[SPEAKER_00]: Yeah, I'd become a select rock, I'm just like, oh no.

51:45.350 --> 51:51.096
[SPEAKER_00]: And there's a cloud over my head, you know, so I can relate to that.

51:53.879 --> 52:07.174
[SPEAKER_00]: Let's talk about how, and this is, I guess the ugly as well, the last silk category, how autism has affected your view upon the way you view society.

52:09.247 --> 52:26.728
[SPEAKER_01]: Uh, well, in this very politically charged environment we live in now, um, you know, my, my empathy, my compassion, those things in me have been expanded because of who my son is and the communities I'm involved in.

52:26.768 --> 52:29.972
[SPEAKER_01]: So it really kind of, um,

52:30.307 --> 53:00.162
[SPEAKER_01]: highlights the challenges politically here in the country now and it I think it creates greater separation from for me from those who have no compassion for immigrants who have no compassion for the poor who have no compassion or think you know their tax dollars should go to themselves

53:00.901 --> 53:23.787
[SPEAKER_01]: It has caused a greater level of frustration, honestly, and me, and maybe animosity towards those who would choose that kind of opposite political direction, and that's something I have to work on because I

53:24.914 --> 53:25.635
[SPEAKER_01]: Well, I don't even know.

53:25.715 --> 53:28.197
[SPEAKER_01]: Sometimes I feel like it's not something I have to work on.

53:28.257 --> 53:36.846
[SPEAKER_01]: I feel like if you don't leave with cat compassion and empathy, then I don't understand you.

53:37.587 --> 53:42.612
[SPEAKER_00]: Well, here's, I want to reiterate something for our audience too.

53:42.672 --> 53:50.179
[SPEAKER_00]: In me and you and I having these conversations about the state of the world, you said something to me to let me realize that

53:50.463 --> 53:56.772
[SPEAKER_00]: that allows me to realize that what the statement you just made is not a political one, but a human one.

53:57.233 --> 53:58.735
[SPEAKER_00]: And then I want the audience to get that as well.

53:58.775 --> 54:01.919
[SPEAKER_00]: And what I mean by that is that I never knew how you voted.

54:01.939 --> 54:06.185
[SPEAKER_00]: I mean, what family?

54:06.205 --> 54:08.448
[SPEAKER_00]: We know each other forever.

54:08.528 --> 54:09.930
[SPEAKER_00]: But I didn't know how you voted.

54:10.391 --> 54:16.740
[SPEAKER_00]: And when we talked about the current state of things, you told me that

54:17.227 --> 54:31.145
[SPEAKER_00]: Right, and so I don't know that at this point you change any, you know, where you're registered or whatever add you, but I'm seeing that to say, I'm sorry, I just realize I didn't check with you to ask you.

54:31.566 --> 54:31.966
[SPEAKER_00]: That's fine.

54:32.187 --> 54:33.589
[SPEAKER_01]: No, I mean, I'm very open.

54:33.609 --> 54:38.455
[SPEAKER_01]: I, for my, you know, most black families are democratic.

54:38.495 --> 54:39.356
[SPEAKER_01]: I think that's a truth.

54:40.318 --> 54:44.403
[SPEAKER_01]: My family very much was for me very early in my career.

54:44.423 --> 54:45.985
[SPEAKER_01]: I was very focused on this.

54:46.977 --> 54:50.180
[SPEAKER_01]: finances and and that kind of keeping my money kind of thing.

54:50.801 --> 54:52.382
[SPEAKER_01]: And so I think that pushed me.

54:52.662 --> 54:54.984
[SPEAKER_01]: I was also very involved in church church.

54:55.585 --> 55:04.133
[SPEAKER_01]: And so for many years that pushed me maybe community wise or what I was surrounded by and it kind of into that Republican space and that belief system.

55:05.114 --> 55:11.159
[SPEAKER_01]: But I'll be honest when the most recent leader of our country, you know, came on the horizon.

55:11.179 --> 55:14.082
[SPEAKER_01]: I'm like, you know, can't go there that that

55:14.450 --> 55:15.553
[SPEAKER_01]: doesn't make sense to me.

55:15.613 --> 55:23.210
[SPEAKER_01]: So that was the beginning of my transition away from that belief system from that, yeah.

55:23.230 --> 55:33.454
[SPEAKER_00]: And that's what I wanted to state because I know that you have just as much of a problem with any democratic candidate that so overtly,

55:34.295 --> 55:36.799
[SPEAKER_00]: I mean, whether it's a vertical word, almost doesn't matter.

55:37.320 --> 55:39.584
[SPEAKER_00]: If there's a lack of empathy, there's a lack of empathy.

55:40.145 --> 55:44.593
[SPEAKER_00]: But the bottom line is you don't care who it is that doesn't have that.

55:45.194 --> 55:54.430
[SPEAKER_00]: And being a caregiver affects that because I think if you live, like you and I both are in the 60s.

55:54.991 --> 55:58.176
[SPEAKER_00]: So to get to that point,

55:58.612 --> 56:12.807
[SPEAKER_00]: and be someone who is remotely evolved or asking questions and trying to do so, it's kind of inevitable that you're going to have more compassion for others as you,

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[SPEAKER_01]: I agree with that.

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[SPEAKER_00]: As you get older.

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[SPEAKER_01]: It's a rage.

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[SPEAKER_01]: Yep.

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[SPEAKER_00]: Yeah.

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[SPEAKER_00]: So then the other thing that happens is you have less tolerance for, and I don't even want to say intolerance, because when we talk about tolerance with regard to how you treat people other than yourself in other communities, I always view like hearing Los Angeles we have either a museum of tolerance.

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[SPEAKER_00]: Tolerance seems like something that you put up with.

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[SPEAKER_00]: You shouldn't have to tolerate somebody else.

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[SPEAKER_00]: You should be curious about that person's shoes and their plate, especially because more times than not, there is the finesse razor here of a line that separates you from their given situation.

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[SPEAKER_00]: You know, and so we can talk about that on the next episode about the pretty as well because it can also be pretty because you look for the best in people, but you also develop this complete intolerance for, maybe that's not ugly, it's just a fact, but a great lack of patience for people that

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[SPEAKER_00]: can't care about other people, and we don't do agree, we don't all have to agree.

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[SPEAKER_00]: But as always, our time is, you know, South Carolina kindness is not political.

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[SPEAKER_00]: I mean, exactly, that's my point.

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[SPEAKER_01]: Yeah.

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[SPEAKER_01]: It's about again, I talked about being in church, and you know, it says, and they're, you know, treat others as you would choose to be treated, right?

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[SPEAKER_01]: And for me, that's not political or religious.

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[SPEAKER_01]: It's just the way life should be lived.

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[SPEAKER_01]: And so when I see people who stand against that, and it's like, no, I want to be treated best and first, and I don't really care what happens to them, then I find it's very difficult to find common ground there, because it's like, that's a completely different worldview.

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[SPEAKER_01]: You know, I believe in inclusion and community and it seems the, you know what, I don't want to make a political.

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[SPEAKER_01]: I just, it makes it very difficult to find any.

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[SPEAKER_00]: It makes it different.

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[SPEAKER_00]: Yes, and I don't know what's worth someone being that way or because you said some things that almost nobody will say.

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[SPEAKER_00]: You know, I don't care about someone so I just want people don't say that.

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[SPEAKER_00]: What they'll do is they will mask.

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[SPEAKER_00]: They will say it under the guys of.

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[SPEAKER_00]: I don't know, freedom or pullboard or something.

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[SPEAKER_00]: If someone wouldn't tell me, just like if someone could say, I'm afraid that I will have less if you have such and such.

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[SPEAKER_00]: I'm just, then you could have an honest conversation.

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[SPEAKER_00]: Don't know what the outcome would be.

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[SPEAKER_00]: But I think it goes back to what we talk about in terms of consciousness because most of us live our lives in autopilot.

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[SPEAKER_00]: We don't even think about what we think about.

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[SPEAKER_00]: We just do what we do when we are, the way we are.

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[SPEAKER_00]: And if you are only, and if you are simply just the way you are,

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[SPEAKER_00]: That gets conflated with who you are and that is something that you can't possibly know if you're just doing what you do and being the way you are.

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[SPEAKER_00]: And so with that said, the time has gone by as fastly as it is fastly, quickly.

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[SPEAKER_00]: As it always does, I want to thank everyone within the Son of my voice.

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[SPEAKER_00]: I want to thank you Maurice, I just, I'm so thankful for this platform in the time that we get to spend together.

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[SPEAKER_00]: And our intention as Maurice said is to make sure that you, you realize that you are not alone.

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[SPEAKER_00]: I again want to thank our partners Billy Footwear.

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[SPEAKER_00]: and encourage you to consider joining us for by weekly call for the DIN and thank you for supporting the show.

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[SPEAKER_00]: We will see you soon.

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[SPEAKER_00]: Let's try and remember to be a little bit more child-like.

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[SPEAKER_00]: Let's try on this.

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[SPEAKER_00]: Questions are more powerful than statements and know that people need your need your love and your compassion.

01:00:03.496 --> 01:00:07.200
[SPEAKER_00]: Thank you so much and we will see you next time on beyond the