How has being a Caregiver affected your relationships with loved ones..including your self?

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[SPEAKER_03]: Welcome to Beyond the Spectrum, every age, every you need.

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[SPEAKER_03]: I am Sean Francis, and I am joined by my good friends.

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[SPEAKER_03]: Susan, a piece of love L, and Maurice McDavid.

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[SPEAKER_03]: Welcome, welcome, welcome.

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[SPEAKER_03]: We are going to be talking to that just today, but in ongoing conversations about how being a caregiver has affected your relationships with those you love in including yourself.

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[SPEAKER_03]: Welcome to another episode of Beyond the Spectrum.

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[SPEAKER_03]: All right, let's jump right into it.

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[SPEAKER_03]: So for those of you who have supported our previous endeavor just two dads, thank you so very much.

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[SPEAKER_03]: This is an extension of that in more ways than nine.

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[SPEAKER_03]: My name is Sean Francis.

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[SPEAKER_03]: I am a husband, father, caregiver, to a son who has autism and is 19 years age diagnosed at the age of three.

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[SPEAKER_03]: and he is one of seven children that we have for which are my sister-in-law's children who we adopted a few years back.

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[SPEAKER_03]: I work in financial services and while serving business owners and the general public, also specializing in building a bridge between fellow special needs and caregiving families and financial service literacy and education.

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[SPEAKER_03]: And

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[SPEAKER_03]: I'm trying to make sure that I give the appropriate introduction to my my co-hosts because everything they do is just huge from professional and personal standpoint as far as caregivers go.

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[SPEAKER_03]: Let's start with Susanna piece of advice.

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[SPEAKER_03]: Susanna is a

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[SPEAKER_03]: mother, warrior, author, life coach for cello special needs families and 50 million other fantastic things that I can't all say at once, I will let her do that.

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[SPEAKER_03]: Welcome Susanna.

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[SPEAKER_01]: Hi, hi, Sean.

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[SPEAKER_01]: So good to be with you.

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[SPEAKER_01]: Hi, Maurice.

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[SPEAKER_01]: I am so happy to be here.

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[SPEAKER_01]: Thank you for that introduction.

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[SPEAKER_01]: And yes, you are correct, Sean, 50 million other things depending on the day.

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[SPEAKER_01]: Maybe twice on Sunday?

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[SPEAKER_01]: I don't know.

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[SPEAKER_01]: But, you know, I have been on this journey with, yeah, as a caregiving, extreme caregiving mother.

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[SPEAKER_01]: It's the only type of caregiving I know.

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[SPEAKER_01]: I am a single mama.

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[SPEAKER_01]: I have a daughter who is also on the autism spectrum.

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[SPEAKER_01]: She also has some other diagnoses.

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[SPEAKER_01]: and unique needs including crazy food allergies ADHD generalized anxiety disorder a lot of these things sometimes go hand in hand she was diagnosed when she was two and a half years old and like your kiddo she is now 19 and we are in the midst of the last year of a public high school and considering

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[SPEAKER_03]: Thank you.

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[SPEAKER_03]: Thank you.

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[SPEAKER_03]: And our next go host is my friend, my cousin, my brother, my blood.

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[SPEAKER_03]: Maurice McDavid is a father to a young man who's on the autism spectrum, also diagnosed that believe it.

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[SPEAKER_03]: Three Isaac hand and he that works in sales and is just a tremendous asset to both the family and his community.

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[SPEAKER_03]: Maurice, welcome.

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[SPEAKER_03]: Welcome and thank you for being part of the ride and beyond the spectrum.

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[UNKNOWN]: Yeah.

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[SPEAKER_00]: I am super excited to be here, really grateful for the opportunity, as Sean said, Isaac is my youngest of five.

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[SPEAKER_00]: So I was a caregiver for many years, then it became a super caregiver when Isaac came along.

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[SPEAKER_00]: And interesting, wonderful, difficult, beautiful journey.

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[SPEAKER_00]: And I'm glad to be here and sure that and hopefully this is a space and encouragement for for those of us who are caregivers.

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[SPEAKER_00]: There you go.

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[SPEAKER_03]: And that's the whole purpose of the show in the movement that we're trying to build or build upon, which we started with just two dads, which is that.

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[SPEAKER_03]: Any excuse or opportunity that we have to remind people generally speaking that you're not alone, and we have more in common than we do otherwise, especially at this time in the world, especially in our country here in the United States.

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[SPEAKER_03]: That becomes very, very, very, very important.

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[SPEAKER_03]: So I want to go back to, because we're talking about how being a caregiver has, you know, affects your relationships with those you love, including yourself.

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[SPEAKER_03]: You said something that I don't think you realize is very profound.

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[SPEAKER_03]: You mentioned having multiple children, so as a result you were a caregiver for years before you became what you referred to as a super caregiver upon Isaac's diagnosis and I don't think we realize that

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[SPEAKER_03]: you know what the definition of caregiving is for many of us from a cultural standpoint.

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[SPEAKER_03]: There are many people that don't identify as caregivers when they are the pit, the epitome of just that because they think I'm just being a parent.

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[SPEAKER_03]: I'm just being a doodiful child if I'm helping care for an elderly parent or something like that.

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[SPEAKER_03]: But we're all

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[SPEAKER_03]: doing or giving some form of caregiving.

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[SPEAKER_03]: Did you always realize that?

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[SPEAKER_03]: Or was that something that came to kind of after the fact?

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[SPEAKER_03]: Because hosting a podcast is what got me to realizing that Laura and I were caregivers.

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[SPEAKER_03]: I just thought, we were parents.

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[SPEAKER_00]: I don't think I realized that.

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[SPEAKER_00]: I think that's become a phrase that I've attached meaning

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[SPEAKER_00]: I don't know how many years, but before I was just a dad, you know, doing everything.

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[SPEAKER_00]: Fortunately, unfortunately, beautifully, difficultly did the conflict with difficulty.

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[SPEAKER_00]: We homeschooled all of our kids.

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[SPEAKER_00]: So I was very involved in their education as far as on the side in the science and the math side.

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[SPEAKER_00]: My wife did 99% of it, but I've been here and there.

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[SPEAKER_00]: So it was a joyful thing for me.

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[SPEAKER_00]: It was a passion.

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[SPEAKER_00]: I loved the fact that I was so involved with my kids and who they were and how they were growing up.

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[SPEAKER_00]: what their education was.

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[SPEAKER_00]: So that was all amazing.

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[SPEAKER_00]: And then, you know, Isaac was added to the mix.

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[SPEAKER_00]: And I guess that's, well, I'll just stop.

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[SPEAKER_00]: I don't really know when the transition happened in my mind.

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[SPEAKER_00]: But I am around all of its caregiving.

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[SPEAKER_00]: Absolutely.

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[SPEAKER_03]: Yeah.

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[SPEAKER_03]: Yeah, because it's really busy just doing what you need to do.

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[SPEAKER_03]: And it's, it's about go time.

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[SPEAKER_03]: And that's it.

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[SPEAKER_03]: Susanna, when did you do you think that you

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[SPEAKER_03]: Well, I have a lesser question than a greater question.

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[SPEAKER_03]: So a lesser question is, is there a line of demarcation for you, what you think that took place?

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[SPEAKER_03]: And then the greater question is, because once the line of demarcation does take place, I think it's then easier for you to recall how being a caregiver affected the first and most important relationship, which is with yourself.

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[SPEAKER_01]: Yeah, so I mean, so many things to respond to there, Sean and I definitely want to be able to, you know, throughout the next.

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[SPEAKER_01]: hour.

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[SPEAKER_01]: So, but I, you know, I'll just start off with, you know, sort of this, this very true and real fact for me in my lifetime.

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[SPEAKER_01]: And that is, I had always, always, always, always dreamed of becoming a mother.

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[SPEAKER_01]: It was the one wish that I had, I just felt it in my bones, like I am for sure going to be a mother.

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[SPEAKER_01]: I, you know, sort of,

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[SPEAKER_01]: fluctuated in my brain like would I be a doctor?

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[SPEAKER_01]: Would I be a best driver?

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[SPEAKER_01]: Would I be at you know all of the things that we thought about I wanted to be a police officer, so I could yell at people and tell them what to do You haven't seen like the yell at people and tell them what to do type

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[SPEAKER_01]: It's a listen at some point.

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[SPEAKER_01]: It only has to come out, Sean.

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[SPEAKER_01]: Okay.

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[SPEAKER_03]: And the leadership.

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[SPEAKER_03]: Yeah, but not just to yell.

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[SPEAKER_03]: You know what I mean?

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[SPEAKER_03]: So, well, I get, I get what you mean.

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[SPEAKER_01]: The authoritative, you don't get to tell me what to do.

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[SPEAKER_01]: I get to tell you to do kind of thing.

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[SPEAKER_01]: Okay.

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[SPEAKER_01]: So,

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[SPEAKER_01]: Anyway, so now we have a police man, a bus driver, a doctor, I wanted to be a pediatrician, all of those things.

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[SPEAKER_01]: Well, guess what?

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[SPEAKER_01]: That is part of my journey as a mother.

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[SPEAKER_01]: But I just, I knew I always wanted to be a mother.

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[SPEAKER_01]: I was like, even if I for some reason can't conceive myself, I will adopt.

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[SPEAKER_01]: I will, I just knew that it was going to be part of my life trajectory.

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[SPEAKER_01]: And as well, I always thought I was going to have a lot of kiddos.

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[SPEAKER_01]: So, you know, I, you know, am noticing your stories where you have, you, you, your heart has to spread, right?

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[SPEAKER_01]: And to, you know, because you don't love any of your children less than the other, right?

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[SPEAKER_01]: Your heart just sticks to people to love and I grew up with four siblings and, you know, I come from a big family.

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[SPEAKER_01]: And so I just thought, this is, you know, I just thought my parents had

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[SPEAKER_01]: You know, um, it wasn't until I became a mother that I realized, wow, this is really hard.

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[SPEAKER_01]: You know, I mean, even just before any sort of diagnosing, right?

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[SPEAKER_01]: This is really, really hard.

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[SPEAKER_01]: And I will say that that line of demarcation happened pretty early because it turns out my daughter Arizona had so many food allergies.

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[SPEAKER_01]: Like that was our first challenging, you know, that was my first step

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[SPEAKER_01]: into like a different kind of motherhood than what I had initially, you know, visioned for myself.

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[SPEAKER_01]: And so I just thought, you know, that first year of her life, she's covered, had to tow in eczema.

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[SPEAKER_01]: Like she was so uncomfortable.

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[SPEAKER_01]: I mean, she was allergic to like 75 different things.

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[SPEAKER_01]: Like pages and pages of printouts from the

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[SPEAKER_01]: allergist and all kinds of doctors.

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[SPEAKER_01]: And I was like, okay, wow, this is a lot.

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[SPEAKER_01]: This is another type of vigilance on top of just becoming a new mother to a newborn who needs you for everything, right?

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[SPEAKER_01]: So that's when I realize like this is,

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[SPEAKER_01]: We, I'm in for a ride and I just thought, okay, so then I'm going to be the allergy mom got it right, right, that'll be my, you know, that'll be my, I don't know, badge of honor, all right, you know, I just thought that's that's that's what I'm going to be and so.

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[SPEAKER_01]: Yeah, that was a rude awakening.

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[SPEAKER_01]: And as we know, as the years progressed, additional diagnoses continued to be added to the list.

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[SPEAKER_01]: So I would say it was pretty early on, just without the autism, without the ADHD, without any of that other stuff, the knowing of that raising a child with the neurodivergent brain, I just knew that it was

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[SPEAKER_01]: you know, so important for me to just be alert, awake, every single thing of my life changed.

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[SPEAKER_03]: Let me ask you, in thinking about, and I'm going to move on to the relationship with how it affects the relationship with spouses.

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[SPEAKER_03]: But in terms of, as you mentioned, a child with a neurodivergent brain, what that made me think of right away is still sticking with the topic of how it affects

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[SPEAKER_03]: of either of you had any suspicion that there's any portion of you.

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[SPEAKER_03]: that is neurodivergent.

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[SPEAKER_03]: After observing habits, behaviors, and things like that, and the diagnosis itself.

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[SPEAKER_03]: I'll say that more detail for another episode, but I think I'm sure that I've recently gotten confirmation to a diagnosis that I too are neurodivergent.

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[SPEAKER_03]: And so how it affects the answer to the question if you were to ask me, how it affects my relationship with myself is like, I can tell you some but then I'll have to get back to you because it's changing by the second.

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[SPEAKER_03]: So,

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[SPEAKER_03]: Have either of you thought of that with regard to yourselves?

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[SPEAKER_00]: Um, I can't say that I think that's been my, um, my reality, the one, the, the, the one piece that I'll say sometimes occurs to me is I cannot sit still for very long.

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[SPEAKER_00]: Like I can't sit at a desk.

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[SPEAKER_00]: I got to get up and I got to go outside.

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[SPEAKER_00]: So I'm in and out of my office a lot in the day.

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[SPEAKER_00]: And if I have a conference coming

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[SPEAKER_00]: all day, you know, while people are talking and presenting, I start losing my mind.

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[SPEAKER_00]: So I don't know if that's it.

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[SPEAKER_00]: Yeah.

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[SPEAKER_00]: A thing.

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[SPEAKER_00]: I don't know if that's anything at all, but it's just who I've been.

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[SPEAKER_03]: It is though.

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[SPEAKER_03]: It is.

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[SPEAKER_03]: I'll tell you what it is.

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[SPEAKER_03]: What it is is an example of how we benefit from

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[SPEAKER_03]: being more childlike and less child-ish.

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[SPEAKER_03]: And what I mean by that, which I use that term often, is keeping the curiosity and the consciousness quotient very high, because you wouldn't know that about yourself, but yourself, where you not self-aware.

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[SPEAKER_03]: And the benefit of that for all of us, just as part of the human experience,

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[SPEAKER_03]: is that if you ask more questions and make less statements, not only do you learn more, but you learn more things about yourself.

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[SPEAKER_03]: And then as a result of that, that gives you so much more capability of giving empathy to other people.

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[SPEAKER_03]: So without a diagnosis, that, you know, there's benefit in that.

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[SPEAKER_03]: And then two of the other thing is I think that

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[SPEAKER_03]: we all consist of, there's no hard stop.

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[SPEAKER_03]: So and so has such and such and that's the end of that.

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[SPEAKER_03]: There's spectrums and pieces of things.

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[SPEAKER_03]: So I'm also of the mind, you know, I'm a little bias in this, even prior to my own diagnosis.

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[SPEAKER_03]: Where I think that many of us have little sprinkles of different things that are spectrum-ish, just generally speaking, even if there isn't a formal diagnosis.

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[SPEAKER_03]: You know, that's my thought.

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[SPEAKER_01]: Yeah, I think also to, well, to answer your question, I, you know, I think that we all have, you know, different brains for certain.

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[SPEAKER_01]: I think there's a spectrum of what is considered, you know, neurotypical and not.

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[SPEAKER_01]: I will also offer though that what was very glaringly obvious to me.

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[SPEAKER_01]: was, you know, are different temperaments that we come into this world, right?

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[SPEAKER_01]: Because that's a consideration as well.

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[SPEAKER_01]: You know, there are all kind, you know, I don't know if you're familiar with like, you know, orchid children and dandelion children, right?

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[SPEAKER_01]: Like it's, I wish I remember her name.

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[SPEAKER_01]: She was so spectacular went to a help group summit recently and

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[SPEAKER_01]: This beautiful brilliant doctor wrote this book and she was just talking about how we're all born with different different temperament so you have like the orchid children who need so much attention and light and care and right you drop an ice cube in once a week and the least sometimes the orchid is okay sometimes it's not like so hard to you know I personally can never like take care of an orchid properly.

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[SPEAKER_01]: And then there was Dandelion children, right, who can, you know, grow and thrive through the cracks of a sidewalk, you know, and they find these spread of growth.

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[SPEAKER_01]: So I feel like I was like a Dandelion, you know, growing up.

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[SPEAKER_01]: I was very, I mean, like I had big feelings about things, but I was a very like adaptable flexible.

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[SPEAKER_01]: You know, I just got along with everybody.

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[SPEAKER_01]: I just made frenzy, you know, that kind of thing.

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[SPEAKER_01]: So I, you know, I had to take that into consideration before, you know, Arizona's diagnoses, because, you know, she, to me, she just seems stubborn.

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[SPEAKER_01]: You know, before I knew what was going on, I was like, why aren't you listening to me?

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[SPEAKER_01]: You know, I think why aren't you responding when I'm calling your name?

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[SPEAKER_01]: I really felt like, are you just,

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[SPEAKER_01]: a stubborn obstinate kid.

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[SPEAKER_01]: I did it.

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[SPEAKER_01]: No, right.

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[SPEAKER_01]: So I think that was what struck me first.

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[SPEAKER_01]: In terms of like, oh, I guess we're just a little bit different.

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[SPEAKER_01]: And so now let me figure out how to raise this child, which is seemingly the opposite of who I am, you know.

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[SPEAKER_03]: right, right, right, wow.

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[SPEAKER_03]: Talk if you will, if you both will, well, let's let's shift to the relationship with the next important thing other than ourselves is our spouses.

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[SPEAKER_03]: And in that regard, let's start with for lack of a better term, division of responsibility or strength versus weaknesses.

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[SPEAKER_03]: And Olaura and I never had a conscious conversation about, OK, I am strong in this area and this area and this area and this area.

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[SPEAKER_03]: So I'll have an a lat.

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[SPEAKER_03]: I'm not as strong in this, this and this, where you are.

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[SPEAKER_03]: So you have an a lat.

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[SPEAKER_03]: Ready?

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[SPEAKER_03]: Go.

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[SPEAKER_03]: I'd love to say that it was that strategic, but no.

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[SPEAKER_03]: That was not the case.

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[SPEAKER_03]: Um, which is kind of a good thing because we kind of just gravitated to what our strengths are and if I said that and while on as a whole it's brought us closer together, I'd be lying if I said that he didn't challenge our our our our marriage because that's just not that's not realistic.

18:08.715 --> 18:12.319
[SPEAKER_03]: I mean that that's that's what that is going to do so.

18:13.649 --> 18:18.800
[SPEAKER_03]: Would you say the same is true for each of you, Maurice, I know that you and Florence are still married.

18:18.840 --> 18:28.540
[SPEAKER_03]: You've talked about how you feel like the diagnosis is saved, you're married, and Susanna, you are a single mom.

18:28.560 --> 18:34.071
[SPEAKER_03]: So if you each will talk about that dynamic and what your experience has been like in that regard.

18:37.105 --> 18:59.895
[SPEAKER_01]: Uh, do you want to go first to a Santa or a show like I want you to go first because I just I Because I feel like I offer and we all have different perspectives right, but I feel like I offer Another one in that I I used to have a spouse so I want to talk about that As well as you know, I haven't always been in this journey by myself.

19:00.015 --> 19:01.577
[SPEAKER_01]: So yeah, okay

19:02.283 --> 19:10.215
[SPEAKER_00]: Um, well, I'll say for me, I apologize, but when I jump back, I just want to, 100% agree with the temperaments.

19:10.235 --> 19:13.119
[SPEAKER_00]: You know, I have five kids and they're very unique.

19:13.139 --> 19:22.252
[SPEAKER_00]: And my first and second daughters were polar opposites, and they are neurotypical, and but they were so different to deal with.

19:22.392 --> 19:23.835
[SPEAKER_00]: My first daughter was a grinder.

19:23.915 --> 19:24.896
[SPEAKER_00]: She's still a grinder.

19:24.956 --> 19:25.557
[SPEAKER_00]: She's a

19:26.600 --> 19:47.477
[SPEAKER_00]: You know, she she hammered from the time she came out of the womb for what she wanted and it was going to be her way or was going to be a war and then my second one came up sweet and slept all the time just smiled and it's like well, it made me think what's wrong with my first daughter because this one is perfection so anyway, there are temperament out there so absolutely when it comes to.

19:47.947 --> 19:50.590
[SPEAKER_00]: my marriage trying to kind of talk about responsibilities.

19:50.990 --> 20:09.852
[SPEAKER_00]: I think we discovered there are certain things I don't like doing and so that would kind of fall hate doing and there are certain things my wife hates doing and so it kind of fell to the other one to not have to do the things that we were just really didn't want to do and that seemed to allow us to cover the things that needed to get done.

20:09.892 --> 20:14.157
[SPEAKER_00]: As far as

20:14.710 --> 20:41.882
[SPEAKER_00]: Like the one I don't know about all marriages, but my marriage there have been times where it was just like, okay, you go your way and I'll go, Mike, it's just the the the battle of personalities and there were times when we, you know, it was like, I think we should probably not continue down this path, but we both passionately love our kids and then with Isaac's diagnosis, it was like that was just a piece that I

20:42.284 --> 20:47.370
[SPEAKER_00]: It felt like it was too big for one person, and I commend you Susanna for doing it.

20:47.410 --> 21:06.834
[SPEAKER_00]: I know you're, I don't know what degree your part has been involved, but that is just a mountain that I didn't see either of us being able to climb effectively, and so it kind of kept pushing us both to keep working on the relationship, keeps staying in the commitment to the relationship, and I'm really grateful for that.

21:06.894 --> 21:11.059
[SPEAKER_00]: I'm really grateful for what I've learned.

21:11.309 --> 21:37.722
[SPEAKER_00]: set of million times in front of Sean that I was really quite a self-focused selfish individual in my young adulthood and then becoming a dad and then becoming Isaac's dad really taught me the value of service and self-list this and delayed gratification and made of those things that are kind of hard for a selfish person to accept, but

21:38.140 --> 21:43.629
[SPEAKER_00]: You know, I had my aunt and tell my wife a couple of years ago, you know, he really is different.

21:43.830 --> 21:44.952
[SPEAKER_00]: She remembered who I was.

21:45.413 --> 21:53.186
[SPEAKER_00]: He really is different and who he was, videos young and she goes, and I think that's all about you, my wife, Florence and being at that.

21:53.226 --> 21:56.672
[SPEAKER_00]: So I'll give them all the credit.

21:57.344 --> 22:05.755
[SPEAKER_01]: Well, you should also, but also acknowledging yourself, Maurice, really, because we have choices.

22:06.376 --> 22:10.401
[SPEAKER_01]: We can decide to swim upstream or not, right?

22:11.122 --> 22:22.778
[SPEAKER_01]: I just feel like you for sure had that openness and willingness, and I actually acknowledge you both because it is a marathon, right?

22:22.758 --> 22:26.344
[SPEAKER_01]: not a sprint this lifetime together.

22:26.364 --> 22:34.677
[SPEAKER_01]: And I, you know, although that though I am divorced, I do have parents who have been married for 54 years, right?

22:34.717 --> 22:38.843
[SPEAKER_01]: And so I see they have a very loving relationship, very committed.

22:38.883 --> 22:44.552
[SPEAKER_01]: And there have been so many ups and downs along the way, of course, because life, right?

22:44.673 --> 22:45.714
[SPEAKER_01]: And now is the goal.

22:46.195 --> 22:48.799
[SPEAKER_01]: And so on and so forth, right?

22:49.218 --> 22:53.909
[SPEAKER_03]: Yeah, you know, I think that you just give me something that I never really stopped to think about.

22:53.949 --> 23:01.708
[SPEAKER_03]: Also, again, this is, again, the whole purpose for the show and the movement we're looking to expand on, which is that we learn from each other and we

23:03.713 --> 23:13.526
[SPEAKER_03]: in some way shape or form make the world a better place, which is that I want to commend you as well because and you can respond to this with as much depth or shallowness or not at all as you want to.

23:14.047 --> 23:24.321
[SPEAKER_03]: But I don't know what straw broke the camel's back in your marriage, so to speak, but people don't stop to think that just as much

23:25.280 --> 23:26.542
[SPEAKER_03]: courage and strength.

23:26.642 --> 23:34.236
[SPEAKER_03]: The amount of courage and strength that it takes to sustain a marriage when you are parents to a caregiving child.

23:35.558 --> 23:42.090
[SPEAKER_03]: It takes a certain amount of that to also accept that parting is the best thing.

23:42.543 --> 23:53.580
[SPEAKER_03]: And that's not necessarily an easy thing to do either unless there's some really horrendous situation that is taking place between those in the marriage.

23:53.620 --> 24:00.371
[SPEAKER_03]: Matter of fact, especially if there isn't a tremendous horrendous situation in terms of abuse or anything like that that's taking place.

24:00.391 --> 24:06.340
[SPEAKER_03]: If you have this basic loving relationship and you care about each other, it makes it

24:06.573 --> 24:11.383
[SPEAKER_03]: easier to go on together longer than perhaps one should.

24:11.844 --> 24:19.941
[SPEAKER_03]: And so it says a lot about making that choice also, especially if you honestly think that that is what's best for your child at that point.

24:20.697 --> 24:40.950
[SPEAKER_01]: Yeah, and I actually want to clarify something and, you know, apologize actually because I was saying before I had to do it alone earlier and I don't do it alone right I, you know, my ex husband and I divorced when Arizona was around eight years old.

24:40.930 --> 24:49.148
[SPEAKER_01]: So that was 11 years ago, and without his support, my life would look very differently, right?

24:49.689 --> 24:54.800
[SPEAKER_01]: When I mean by sort of single motherhood is the day-to-day, right?

24:54.860 --> 24:57.707
[SPEAKER_01]: So she lives with me full-time, right?

24:57.727 --> 25:00.593
[SPEAKER_01]: So the food...

25:00.573 --> 25:01.535
[SPEAKER_01]: stuff, right?

25:01.595 --> 25:03.017
[SPEAKER_01]: Because of all her allergies, right?

25:03.057 --> 25:06.603
[SPEAKER_01]: Just getting up, organizing her routine, her schedule, her therapist, right?

25:06.843 --> 25:09.808
[SPEAKER_01]: Um, bringing him, I have a fever, I can't, right?

25:09.868 --> 25:16.879
[SPEAKER_01]: So so all of that feels very much like, like, I'm a solo warrior sometimes.

25:17.380 --> 25:21.687
[SPEAKER_01]: And I say that in, in, in,

25:21.667 --> 25:29.791
[SPEAKER_01]: in very loving and respectful tone and energy toward my ex-husband, who works really, really hard.

25:29.812 --> 25:30.052
[SPEAKER_01]: Right?

25:30.112 --> 25:31.798
[SPEAKER_01]: We just- Right?

25:31.818 --> 25:32.580
[SPEAKER_03]: Glad you said that, too.

25:32.600 --> 25:34.967
[SPEAKER_03]: Yeah, that's good because- Because there are-

25:35.858 --> 25:40.304
[SPEAKER_01]: I was gonna say, because I'm a single mother, but I'm not a single supporting mother.

25:40.624 --> 25:41.686
[SPEAKER_01]: Do you know what I'm saying?

25:41.926 --> 25:42.407
[SPEAKER_03]: There you go.

25:42.527 --> 26:02.473
[SPEAKER_03]: And that goes back to, you know, that's kind of why we created our men's group, the Dan, which we'll talk about at the end of the show as well, which is a support group for men who are that and or caregivers, because there are those people, both men and women, who are single parents in,

26:02.453 --> 26:22.116
[SPEAKER_03]: the truest sense in that they carry take on everything because the other a spouse or parent is completely absent, not your case, but still when you're talking about day to day and who has primary custody and everything, two things can be true at the same time and that

26:22.096 --> 26:32.827
[SPEAKER_03]: you acknowledge what Susanna's, Arizona's dad does in terms of both in contributes in terms, you know, as a parent and everything.

26:33.068 --> 26:41.296
[SPEAKER_03]: And at the same time, what it's a like to have her with you primarily and do those things on a day-to-day basis.

26:41.316 --> 26:43.699
[SPEAKER_03]: So definitely, most definitely.

26:43.919 --> 26:45.561
[SPEAKER_01]: Yeah, yeah.

26:45.581 --> 26:50.466
[SPEAKER_00]: Yeah, I mean let me cring you because that, there are times when you really need

26:51.408 --> 27:01.442
[SPEAKER_00]: I need a break from this and because I have a wife, I can say, you know, I gotta go for a walk, you know, because my son sometimes is incessantly making noises or whatever it is.

27:01.522 --> 27:15.542
[SPEAKER_00]: And it's just, I've gotten to this point and I'm like, okay, I gotta go for a walk, you know, and that opportunity to kind of just unplug from the caregiving for whatever space of time is,

27:16.197 --> 27:45.715
[SPEAKER_00]: is incredibly valuable to me and you know that's not I don't imagine that's your SNR, those are 18, 19 now so maybe it's not like it was but yeah that's that's a heavy low I mean it's we all we all carry it loving our kids and it's not you know it's not a negative it's not a burden it's all that but there there are realities to the draw that it takes from from your mind from your body from your spirit so doing that on your own let me

27:46.235 --> 27:47.076
[SPEAKER_00]: Good work from us.

27:47.116 --> 27:47.537
[SPEAKER_00]: Definitely.

27:47.998 --> 27:49.620
[SPEAKER_03]: Yeah.

27:49.640 --> 27:57.591
[SPEAKER_03]: How do you think being a caregiver has affected your relationships with others?

27:57.712 --> 28:08.066
[SPEAKER_03]: That means the friends that you've gained that you wouldn't have were not for the diagnosis as well as maybe those that you've lost.

28:08.627 --> 28:11.972
[SPEAKER_03]: And then those family members that you have to

28:12.728 --> 28:17.914
[SPEAKER_03]: love with a little bit of a high's metrophy pose and just kind of push him off a little bit.

28:19.816 --> 28:22.639
[SPEAKER_01]: We call that loving from afar, Sean.

28:22.699 --> 28:22.959
[SPEAKER_03]: Yeah.

28:23.199 --> 28:23.760
[SPEAKER_03]: There you go.

28:23.780 --> 28:24.621
[SPEAKER_03]: There you go.

28:25.301 --> 28:25.602
[SPEAKER_03]: Yes.

28:25.962 --> 28:26.262
[SPEAKER_03]: Yes.

28:26.583 --> 28:26.843
[SPEAKER_03]: Yeah.

28:28.164 --> 28:29.646
[SPEAKER_03]: Talk about each of those if you guys will.

28:32.749 --> 28:39.917
[SPEAKER_01]: I, you know, my cat just, I was just going to say hey for those

28:40.167 --> 28:42.931
[SPEAKER_00]: Well, yeah, let's have a door mysteriously swing open.

28:43.572 --> 28:45.295
[SPEAKER_00]: Yes, for those of us.

28:45.876 --> 28:47.278
[SPEAKER_00]: I hope you have the pet.

28:47.378 --> 28:47.639
[SPEAKER_01]: Excuse me.

28:47.659 --> 28:49.281
[SPEAKER_01]: Speaking of those who have passed.

28:49.882 --> 28:50.443
[SPEAKER_01]: Do you?

28:50.564 --> 28:51.124
[SPEAKER_00]: Oh, why?

28:51.144 --> 28:51.785
[SPEAKER_00]: No, no.

28:52.026 --> 28:52.527
[SPEAKER_00]: Really?

28:52.687 --> 28:53.448
[SPEAKER_00]: Yeah.

28:53.829 --> 28:55.291
[SPEAKER_00]: It's either pet or it's paranormal.

28:56.233 --> 28:57.394
[SPEAKER_01]: Right.

28:57.414 --> 28:58.957
[SPEAKER_00]: It could be closed.

28:58.977 --> 29:00.199
[SPEAKER_02]: Give me a hug.

29:00.219 --> 29:00.319
[SPEAKER_02]: Yeah.

29:00.856 --> 29:17.751
[SPEAKER_01]: Yeah, I, um, relationships with others, man, I will say that, you know, as someone, you know, in, in her 50s, right, I have lived some time on this earth and I have seen I have.

29:17.731 --> 29:21.537
[SPEAKER_01]: girlfriends and friends and folks that I call my tribe, right?

29:21.597 --> 29:32.254
[SPEAKER_01]: They've surrounded me with love and care and attention and support for Arizona, but, you know, things, you know, shift and change in all of our lives.

29:32.334 --> 29:36.280
[SPEAKER_01]: And so I have found that my relationship

29:36.496 --> 29:48.339
[SPEAKER_01]: with others, whether they are colleagues or, you know, mates on the tennis court, you know, or, you know, moms at the school where Arizona goes.

29:49.020 --> 29:51.906
[SPEAKER_01]: I just feel like I have

29:51.886 --> 30:16.982
[SPEAKER_01]: had this beautiful like opportunity to just be so conscious about who and where and how I want to spend my time, who with how much time am I going to answer that phone call that I know is probably going to be just a gossip session or someone just needing to vent for 45 minutes, but I just can't hold that right now.

30:16.962 --> 30:20.866
[SPEAKER_01]: I just feel like my relationships have been so much more intentional.

30:21.227 --> 30:37.685
[SPEAKER_01]: It's a beautiful thing and you know, I, you know, I, I think that has been one of the many blessings of being a parent to Arizona, one of the many many gifts that I've been able to receive on this journey.

30:38.186 --> 30:39.527
[SPEAKER_01]: And I'm so grateful for that.

30:40.672 --> 30:41.853
[SPEAKER_03]: definitely, definitely.

30:41.873 --> 30:50.682
[SPEAKER_03]: I, it's interesting you say that because I, trying to make this as short as I possibly can.

30:53.705 --> 30:57.990
[SPEAKER_03]: The time of us recording is we're firstly into the new year, right?

31:00.332 --> 31:06.038
[SPEAKER_03]: I have through mentors that I've had personally as well as those that I've

31:07.317 --> 31:09.720
[SPEAKER_03]: acquired online through books and things like that.

31:09.780 --> 31:18.931
[SPEAKER_03]: When everybody talks about putting together a plan for your year and making a business plan or a life plan, it starts with these big, huge elaborate things.

31:19.552 --> 31:30.405
[SPEAKER_03]: And one of them is a mentor that actually has one that begins with something that's very profound, which is writing your eulogy and then you back engineer it to have

31:30.605 --> 31:37.432
[SPEAKER_03]: put people in a position to say the things about you, that you would hope they say, because you've lived that life accordingly, right?

31:37.452 --> 31:38.914
[SPEAKER_03]: And it's great value in that.

31:38.934 --> 31:47.202
[SPEAKER_03]: But what I realize, partially through my diagnosis and then just my own self is that those big things, those are just too many big moving parts.

31:47.242 --> 31:49.505
[SPEAKER_03]: I can get all hot and bothered about putting it together.

31:49.565 --> 31:57.473
[SPEAKER_03]: It's great, but sticking to a book or a plan that huge is difficult.

31:57.672 --> 32:08.683
[SPEAKER_03]: adopted an idea from someone outside that I saw a talking about getting rid of any and everything that distracts you from things that you're trying to accomplish.

32:09.164 --> 32:10.185
[SPEAKER_03]: And for me, that's a lot.

32:11.106 --> 32:14.649
[SPEAKER_03]: Just like, oh, shiny object squirrel, you know, I just easily distracted.

32:15.230 --> 32:20.795
[SPEAKER_03]: So when it talks about getting rid of those things, it started with clothes.

32:21.636 --> 32:24.439
[SPEAKER_03]: So, you know, it shouldn't be

32:25.263 --> 32:41.635
[SPEAKER_03]: undertaking, you shouldn't take that long, but I realize how many clothes and things that that I just have met, in fact, just put them out for donation, you know, just a lot of things that, and then I found some things that I wanted to hold onto, and I realized, if you look at my office, my office is a, a,

32:42.610 --> 33:02.982
[SPEAKER_03]: and orderly miss because I realize that I hold on to things a lot and it's sometimes it's not just a matter of you know, loving the things but sometimes it's maybe fear and it's a very much of a scarcity mindset so I learn that thing about myself and the same thing is true of

33:03.873 --> 33:14.271
[SPEAKER_03]: not just the physical stuff and this is the most difficult part is the things that you're carrying and if you are not a person who is weighted down and walking around like slup rock for those that remember

33:14.842 --> 33:19.509
[SPEAKER_03]: Flintstones, you know, just a negative person with a, will it cloud over their head?

33:19.609 --> 33:34.510
[SPEAKER_03]: Just oh, oh, if you're not that negative, that much of an obviously negative person, you probably don't even realize how many things you're carrying in your emotional pockets that are heavy as hell and just really weigh you down.

33:35.331 --> 33:35.972
[SPEAKER_03]: And

33:35.952 --> 33:38.576
[SPEAKER_03]: some relationships need to be completely cut off.

33:39.277 --> 33:41.320
[SPEAKER_03]: Some of them need to be loved from afar.

33:41.861 --> 33:46.988
[SPEAKER_03]: Would you have to stop and ask about that and then it goes back again to the whole thing about raising your consciousness.

33:47.008 --> 33:50.974
[SPEAKER_03]: So I've been emptying jars literally and figuratively.

33:51.054 --> 33:53.978
[SPEAKER_03]: I have a family member with whom there's some...

33:54.532 --> 33:56.914
[SPEAKER_03]: discord because they have some within themselves.

33:57.455 --> 34:21.298
[SPEAKER_03]: And I realized that I needed to let them know that something they said had really, really bothered me and just because I want them to know and I had a conversation with my dad and he said, you know, you need to like let that go and I realize that the reason I really wanted to let this person know was because really because I love them and that I was hurt and I arrived at the conclusion that you know what?

34:21.464 --> 34:23.527
[SPEAKER_03]: I'm just going to let them know that I love them and that's it.

34:23.547 --> 34:24.708
[SPEAKER_03]: I'm not going to say anything else.

34:24.808 --> 34:29.955
[SPEAKER_03]: And then I, within myself, I am going to actually let it go.

34:30.736 --> 34:31.657
[SPEAKER_03]: That's not a difficult.

34:31.838 --> 34:33.620
[SPEAKER_03]: I mean, that's not, I can't even speak right.

34:33.960 --> 34:35.162
[SPEAKER_03]: That's not an easy thing.

34:36.544 --> 34:42.171
[SPEAKER_03]: But not everything difficult is big and heavy and right in front of you, too.

34:42.452 --> 34:50.442
[SPEAKER_03]: You know, there's things that are

34:52.025 --> 34:57.394
[SPEAKER_03]: as opposed to loud, heavy, boisterous weight, but some heavy things are very, very quiet.

34:57.835 --> 34:58.777
[SPEAKER_03]: That's my rambles, sorry.

35:05.007 --> 35:06.690
[SPEAKER_03]: We'd love to recommend you just add to that.

35:06.911 --> 35:07.912
[SPEAKER_03]: So thank you, thank you.

35:09.215 --> 35:14.083
[SPEAKER_03]: I think you're giving me just adds to that because the other thing is it's so covert, you know?

35:14.603 --> 35:18.369
[SPEAKER_00]: My spilling silence, is that I love it?

35:18.389 --> 35:19.631
[SPEAKER_00]: I love the long pregnant.

35:19.851 --> 35:22.456
[SPEAKER_00]: I'm beautiful way to fill the silence.

35:22.476 --> 35:24.238
[SPEAKER_00]: That pregnant pause is just going along, girl.

35:24.258 --> 35:25.801
[SPEAKER_00]: I'm like, woo.

35:25.821 --> 35:29.827
[SPEAKER_03]: Well, because my thought is also like, you know, where did that led us like then?

35:29.927 --> 35:30.588
[SPEAKER_03]: That was pretty.

35:30.729 --> 35:35.036
[SPEAKER_03]: It's either, that was profound or from what?

35:35.176 --> 35:36.578
[SPEAKER_03]: What did he just say?

35:36.558 --> 35:47.817
[SPEAKER_03]: you know, but as I'm because I feel like I'm discovering myself like as as we sit here, you know, yes, and I think it's easy, I think it's easier to deal with.

35:47.965 --> 36:03.189
[SPEAKER_03]: things that are overtly heavy, things that overtly bring you down, a person who doesn't hold their head up like myself, the areas where I lack confidence in life are not things that cause me to hold my head down.

36:03.229 --> 36:06.535
[SPEAKER_03]: So therefore, they're a little more difficult to identify.

36:07.116 --> 36:14.968
[SPEAKER_03]: And then as a result, when you have the whole caregiving aspect and you're just doing what you do, if you don't stop for a second to check in with yourself,

36:15.455 --> 36:18.842
[SPEAKER_03]: You don't even realize what it is you do, how you do it, why or who you are.

36:20.605 --> 36:29.042
[SPEAKER_01]: Well, I think a lot, I think a big part of the caregiving journey, which is very understandable is that we go into.

36:29.444 --> 36:37.471
[SPEAKER_01]: this sort of go mode or your mode wrote behavior mode in terms of all of the things that need to be done.

36:38.372 --> 36:45.058
[SPEAKER_01]: Not to say that we don't want to come back to our own feelings and not to say that we want to live a numbed out life, right?

36:45.659 --> 36:50.864
[SPEAKER_01]: It's just that sometimes in the moments and many moments in my case.

36:51.084 --> 36:57.730
[SPEAKER_01]: I mean, even just right now, I've had to mute myself a couple of times because

36:57.710 --> 36:59.332
[SPEAKER_01]: Right.

36:59.353 --> 37:02.297
[SPEAKER_01]: And, you know, the cats are screaming, right?

37:02.437 --> 37:05.983
[SPEAKER_01]: And Arizona is, you know, she makes a lot of noise.

37:06.043 --> 37:07.645
[SPEAKER_01]: Like, that's just her thing.

37:07.926 --> 37:09.588
[SPEAKER_01]: Luckily, we have a little back house.

37:10.830 --> 37:15.357
[SPEAKER_01]: Which is where she can rage to her kpop, which I think is what she's doing right now.

37:16.599 --> 37:22.688
[SPEAKER_01]: But I, you know, it's, I feel like again, back back to this sort of.

37:23.005 --> 37:26.569
[SPEAKER_01]: vigilance, like, I feel like I'm always on, right?

37:26.589 --> 37:31.295
[SPEAKER_01]: I feel like I'm always ready to jump out of my chair or respond to them.

37:32.096 --> 37:47.835
[SPEAKER_01]: Even if there is no one as in school, even if there's an activity that she's very, you know, very much participating in that is, that she's happy to do a preferred activity, preferred activity, like any given moment.

37:48.976 --> 37:49.637
[SPEAKER_01]: You know,

37:50.056 --> 37:50.557
[SPEAKER_01]: Right?

37:51.398 --> 37:52.661
[SPEAKER_01]: Yeah.

37:52.721 --> 37:58.692
[SPEAKER_01]: I think that's what you mean by the the over like in your face have to respond.

38:00.495 --> 38:07.948
[SPEAKER_03]: You know, and because of that you don't you don't notice this the silent weight and there's a one of the guys in our in our group, the dead.

38:07.968 --> 38:08.369
[SPEAKER_03]: I'm sorry.

38:08.429 --> 38:09.972
[SPEAKER_03]: I could you off to.

38:10.171 --> 38:15.477
[SPEAKER_01]: That's okay, like turns out I like to ramble also, Sean, give me space for that.

38:16.458 --> 38:39.283
[SPEAKER_03]: Well, what what are the guys in our in our men's group that then is he and his wife for They have a see that an only child an adult on the spectrum and he told me that He has served in the military and it was explained to him by a therapist that the level of PTSD that we carry as caregivers

38:39.770 --> 38:48.849
[SPEAKER_03]: As a result of being on all the time, it's comparable to some wartime experiences.

38:49.350 --> 38:56.163
[SPEAKER_03]: Now, again, I'm sure it probably relates to drips of pressure as opposed to just a gallon so to speak.

38:56.564 --> 38:59.871
[SPEAKER_03]: But the one thing I want to say in my attempt to give you grace is

39:01.690 --> 39:16.324
[SPEAKER_03]: The other thing being, you know, so insular, half of what you just talked about with the exception of for those of us those that are that will see this episode versus just hear it with the exception of that door in the background that open and hearing the cat me out just a little

39:18.295 --> 39:19.257
[SPEAKER_03]: we didn't know that.

39:19.277 --> 39:21.423
[SPEAKER_03]: We have no idea that Arizona is sending any doors.

39:21.443 --> 39:22.826
[SPEAKER_03]: You can't even hear that.

39:23.087 --> 39:32.490
[SPEAKER_03]: And that's a microcosm of what it is usually for like, like for us as caregivers, where we're just like everybody sees this.

39:32.570 --> 39:35.477
[SPEAKER_03]: Even when you get to a point where you don't really care where other people think.

39:36.976 --> 39:41.062
[SPEAKER_03]: inwardly, there's a whole lot of chaos because of all this stuff going on around you.

39:41.903 --> 39:47.651
[SPEAKER_03]: Outwardly, there's that much of it that's seen unless there's some tremendous meltdown or something like that.

39:47.671 --> 39:53.238
[SPEAKER_03]: And I think I'm going to touch it before I was in Costco with Elijah when he was, I don't know, he might have been 10 or something like that.

39:53.338 --> 39:55.221
[SPEAKER_03]: No, he was younger than that because he was in the shopping cart.

39:55.802 --> 39:57.524
[SPEAKER_03]: And he was having this massive meltdown.

39:57.744 --> 40:05.515
[SPEAKER_03]: And even in that case, people weren't looking as much as I thought they were.

40:05.765 --> 40:09.952
[SPEAKER_03]: You know, and it's never as bad on the outside.

40:09.992 --> 40:14.398
[SPEAKER_03]: It's rarely as bad on the outside as it seems or feels on the inside.

40:16.301 --> 40:20.107
[SPEAKER_00]: You know, I kind of want to jump in there because there is for me.

40:20.147 --> 40:26.117
[SPEAKER_00]: There is kind of always a weird pressure is is.

40:26.838 --> 40:30.764
[SPEAKER_00]: Is it going to escalate, right?

40:31.806 --> 40:32.667
[SPEAKER_00]: So what is?

40:33.271 --> 40:51.988
[SPEAKER_00]: What if, you know, so when you kind of talked about the PTSD that we've had sessions where, you know, Isaacs had a meltdown, right, and that's in public or at home, and strangely enough, they're, I've said to them, the whole family is like, oh, is this going to be one of those sessions where we can't bring him down.

40:51.968 --> 40:56.595
[SPEAKER_00]: where he's just going to continue to cycle up and there's kind of nothing you can do about it.

40:56.615 --> 41:00.721
[SPEAKER_00]: And that means that doors are going to start getting slammed and he's going to threaten to elope.

41:00.781 --> 41:02.483
[SPEAKER_00]: He's going to, I'm out of here.

41:02.503 --> 41:09.634
[SPEAKER_00]: I'm leaving, you know, and so we've had a multiple times go out the front door and I've had to walk behind him until he comes down.

41:10.034 --> 41:18.887
[SPEAKER_00]: And that's typically at midnight when a clock to a clock in the morning and your dog tired and this is all going on.

41:19.795 --> 41:32.895
[SPEAKER_00]: You know, I guess the reason it's fresh is like what I think was yesterday or the day before he started speeding up and then we're all like, oh, no, and it's just it's a trauma.

41:33.436 --> 41:40.366
[SPEAKER_00]: And some of his siblings are like going in the room and closing their doors because they just want to cut off from it, right?

41:40.827 --> 41:45.634
[SPEAKER_00]: And then my wife and I are like trying to do this dance of how do we DS clay.

41:45.952 --> 41:56.724
[SPEAKER_00]: And fortunately it didn't, it didn't go to the heights that it can go, but it was, you know, I remember it was so, I guess it was night before the neck.

41:56.784 --> 41:57.805
[SPEAKER_00]: I was out that night.

41:57.825 --> 42:01.049
[SPEAKER_00]: I was so kind of when it was all done, I was finally able to go to sleep.

42:01.429 --> 42:04.713
[SPEAKER_00]: It was so hard to get up in the morning because I was drained out from the stress of that.

42:04.753 --> 42:06.295
[SPEAKER_00]: So he's a different type of tired.

42:06.335 --> 42:06.515
[SPEAKER_00]: Yeah.

42:07.216 --> 42:07.436
[SPEAKER_00]: Yeah.

42:07.456 --> 42:11.841
[SPEAKER_00]: And then the other piece that I was thinking about as you guys were talking is I am not

42:12.327 --> 42:13.391
[SPEAKER_00]: I don't like routine.

42:13.732 --> 42:15.698
[SPEAKER_00]: I buck routine, it drives me in craze.

42:15.718 --> 42:18.167
[SPEAKER_00]: I feel like I'm trapped if I got to do everything every day.

42:18.648 --> 42:23.505
[SPEAKER_00]: And so having a child on autism and really having to restrict food in the house.

42:24.267 --> 42:24.548
[SPEAKER_00]: And

42:24.781 --> 42:32.214
[SPEAKER_00]: Fortunately for us, I don't know if it's been forced because of the kind of parents we are, you know, a lot of autistic kids have very specific schedules they want to stick to.

42:32.755 --> 42:37.202
[SPEAKER_00]: And I'm maybe because of the parents, the person I am, my son just couldn't get that from me.

42:37.703 --> 42:42.451
[SPEAKER_00]: So he's gotten much more flexible and not having to have things go on certain schedules.

42:44.074 --> 42:45.777
[SPEAKER_00]: But having to try and move.

42:46.870 --> 42:54.098
[SPEAKER_00]: work within those parameters that are good and healthy for him and help him to grow.

42:56.180 --> 43:01.566
[SPEAKER_00]: Despite his autism has been incredibly challenging for me because that's not my personality.

43:01.626 --> 43:02.407
[SPEAKER_00]: I'm in sales.

43:02.447 --> 43:03.548
[SPEAKER_00]: I like to talk to people.

43:03.988 --> 43:05.550
[SPEAKER_00]: I like to free form it and flow.

43:06.131 --> 43:12.017
[SPEAKER_00]: And that's why I never wanted to clock in and clock out of any work because I feel trapped.

43:12.503 --> 43:22.421
[SPEAKER_00]: It's been it's been a journey and and I think about the people who are listening to this and the parents and the caregivers and I want to say it's okay to be who you are in this.

43:23.784 --> 43:35.305
[SPEAKER_00]: You know, we've all struggled from different perspectives and I hope that these conversations that we have are encouragement are reminders that

43:35.875 --> 43:37.337
[SPEAKER_00]: it's okay to be who you are.

43:37.617 --> 43:38.818
[SPEAKER_00]: You are far from perfect.

43:38.878 --> 43:40.240
[SPEAKER_00]: You're not going to do it perfectly.

43:40.700 --> 43:42.482
[SPEAKER_00]: None of us have none of us will.

43:43.263 --> 43:54.275
[SPEAKER_00]: I know the reason I'm on this podcast is I am just hoping that something I say or something we say will resonate with a listener and they'll have the energy to do another day.

43:54.755 --> 44:03.925
[SPEAKER_00]: Although getting insight that helps to make their life a little bit better or I hadn't heard that before

44:04.850 --> 44:09.398
[SPEAKER_00]: Sorry, if I went off on a tangent, but those are kind of just percolating as you guys were sharing.

44:09.418 --> 44:15.589
[SPEAKER_01]: So, no, do it, it's, it's, yeah, join the crowd, join the, join the club.

44:16.411 --> 44:23.263
[SPEAKER_01]: No, but I also feel like too, and then therefore, you know, someone out there listening or,

44:23.243 --> 44:30.510
[SPEAKER_01]: It just, I just, you know, I think about when we all first receive diagnoses for our children way back in the day, you know.

44:30.550 --> 44:36.977
[SPEAKER_01]: We all happen to have adults on this spectrum, legal adults, right?

44:38.018 --> 44:52.913
[SPEAKER_01]: And at the same time, like, I feel it in my bones that original sort of deer in the headlight, like what's going to happen, what's next, I don't know, right?

44:52.893 --> 45:03.207
[SPEAKER_01]: And I, you know, my quest as an advocate for disability families, as a coach, as an author, as a speaker, as a podcast co-host, is

45:03.490 --> 45:08.198
[SPEAKER_01]: for anyone to just feel like just a little bit less alone.

45:08.639 --> 45:12.666
[SPEAKER_01]: You know, I feel that in this lifetime, we are all connected.

45:12.686 --> 45:25.828
[SPEAKER_01]: You know, we are all light beings connected to, you know, others on this earth, those who have passed non-human beings, right, animals and plants.

45:25.888 --> 45:29.194
[SPEAKER_01]: And I just, I just want,

45:29.174 --> 45:35.482
[SPEAKER_01]: Yeah, I just want I want you all to know that that you are not alone.

45:35.622 --> 45:57.409
[SPEAKER_01]: It might feel like you are just alone like I'm just on my own here in the middle of the the night as my child is, you know,

45:57.389 --> 46:03.319
[SPEAKER_01]: three month period last year of just this first separation around contracting rabies.

46:03.659 --> 46:04.982
[SPEAKER_01]: I don't know where it came from.

46:05.002 --> 46:06.384
[SPEAKER_01]: Do you know what I'm saying?

46:06.684 --> 46:20.848
[SPEAKER_01]: And so it's just like, you know, even hearing, even hearing other children or other people saying, mommy at the store, I literally

46:21.082 --> 46:31.395
[SPEAKER_01]: I literally, I, I, I, I jump out of my skin sometimes and the reasoning for the screaming of the mommy.

46:31.848 --> 46:33.210
[SPEAKER_01]: you know, fill in the blank.

46:33.230 --> 46:33.751
[SPEAKER_02]: Yeah.

46:33.771 --> 46:36.514
[SPEAKER_01]: There's an aunt near my plate, right?

46:37.035 --> 46:44.605
[SPEAKER_01]: So, so it's just, woo, I mean, again, I've learned how to, you know what I've learned how to do.

46:44.745 --> 46:59.965
[SPEAKER_01]: I've learned how to press that mute button so quick because I am often, you know, on zooms with clients or giving a

46:59.945 --> 47:01.939
[SPEAKER_01]: There is an outburst.

47:03.387 --> 47:05.510
[SPEAKER_01]: that man, our body keeps the score.

47:06.110 --> 47:07.752
[SPEAKER_03]: Cause I think that it does.

47:07.812 --> 47:08.734
[SPEAKER_03]: That it does.

47:09.274 --> 47:18.926
[SPEAKER_03]: Since I want to touch on and I know for those of those that are joining us for the first time, new to the new show, we'll be spending more time on the following topic.

47:18.966 --> 47:26.135
[SPEAKER_03]: But I want to speak, want you to speak to how you help families professionally.

47:26.155 --> 47:29.860
[SPEAKER_03]: I want to, I want as many people as possible to know about your service and what you do.

47:29.880 --> 47:31.622
[SPEAKER_03]: Cause you just talked about being able to,

47:32.581 --> 47:35.864
[SPEAKER_03]: you give a experience-based service.

47:36.165 --> 47:45.474
[SPEAKER_03]: In other words, it's like the Heracolum for men, size, brother, whatever they're going to do, but not just the member of the, I'm also, I'm also, I'm not just the president, I'm also a member.

47:46.054 --> 47:49.378
[SPEAKER_03]: You don't just give support, right?

47:50.078 --> 47:59.668
[SPEAKER_03]: You, you is the techniques in your everyday life that you apply to families to help them life plan when it comes to caregiving and balancing it.

47:59.986 --> 48:13.396
[SPEAKER_03]: share with us how that works from a client perspective, you know, and in each case is different, but some of the things that you do to help people cope with that on button that seems to be forever pressed.

48:14.699 --> 48:16.864
[SPEAKER_01]: It's right.

48:17.570 --> 48:23.716
[SPEAKER_01]: Well, so first, you know, my life is my work and my work is my living.

48:24.036 --> 48:25.857
[SPEAKER_01]: Everything is intertwined.

48:26.458 --> 48:37.868
[SPEAKER_01]: I feel absolutely in alignment in terms of my purpose of, you know, being of service to this beloved community in this lifetime as a human being on this earth.

48:37.888 --> 48:40.691
[SPEAKER_01]: Okay, I feel so, I'm so grateful every morning.

48:40.711 --> 48:47.577
[SPEAKER_01]: I'm like, wow, I know what I'm here for,

48:47.557 --> 48:52.321
[SPEAKER_01]: And I also feel like I teach what I most need to learn.

48:52.782 --> 49:01.689
[SPEAKER_01]: Like I haven't just, there's not, in my brain, I haven't reached like success, right?

49:01.869 --> 49:06.473
[SPEAKER_01]: I feel like I'm, there's no such thing, right?

49:06.573 --> 49:09.836
[SPEAKER_01]: But I haven't just reached this goal and then that's it.

49:10.357 --> 49:17.563
[SPEAKER_01]: You know, it's like, you learn to brush your teeth and you're like, okay, cool, I brush my teeth, that's it, right?

49:18.033 --> 49:40.513
[SPEAKER_01]: I know for me I got into this work very organically and naturally because you know I was trying to figure out answers for resources and support and guidance in any way I could for raising Arizona and I realized that as I was advocating so much for her.

49:40.882 --> 49:44.727
[SPEAKER_01]: I realized that I also needed to advocate for myself.

49:45.448 --> 49:49.614
[SPEAKER_01]: And so I, you know, it's been this beautiful parallel journey.

49:49.634 --> 49:57.925
[SPEAKER_01]: I, you know, felt so like I said, like, during the headlights back then, I find myself to be very tenacious.

49:58.085 --> 49:59.707
[SPEAKER_01]: I have no problem sales.

50:00.228 --> 50:02.531
[SPEAKER_01]: I got you Maurice, like I can not on a door.

50:02.551 --> 50:06.957
[SPEAKER_01]: I can get when I need to get, like that's never been a problem, you know?

50:06.937 --> 50:15.124
[SPEAKER_01]: And yet, and still, I feel very educated, you know, I yet and still, I was

50:15.323 --> 50:18.288
[SPEAKER_01]: met with closed doors and nose, you know what I mean?

50:18.448 --> 50:20.131
[SPEAKER_01]: Like, don't tell me no.

50:20.151 --> 50:21.853
[SPEAKER_01]: I will find another way.

50:21.893 --> 50:28.524
[SPEAKER_01]: And so I wanted to share all of that with anybody who could find that to be supportive.

50:28.664 --> 50:36.536
[SPEAKER_01]: And it started, you know, in the waiting rooms of the therapy centers where Arizona was getting her occupational therapy or speech therapy.

50:36.576 --> 50:36.977
[SPEAKER_01]: And

50:36.957 --> 50:46.252
[SPEAKER_01]: You know, there are other mothers there or there are nannies or other caregivers, sometimes there are grandparents there and I just wanted to share hey guys, did you know, did that right and so.

50:46.633 --> 50:56.248
[SPEAKER_01]: And so that led to, you know, you know, doing it for a living and that has branched out to so many different modalities in terms of.

50:56.600 --> 51:23.248
[SPEAKER_01]: coaching one-on-one, support groups, workshops, consulting with corporations, and co-hosting podcasts, podcasts, and writing, and being a published author, and all kind of fun things, and I just know that from the inside out, I just always wanted to create, I wanted to create the things, and I'm still ever creating, and ever becoming,

51:23.228 --> 51:51.919
[SPEAKER_01]: What I needed most back then, and what I needed most during the next challenging season, or getting to the first IEP, or whatever it is, and I really feel like I work with people and individuals who are also seeking something different within themselves and not just

51:51.899 --> 52:01.352
[SPEAKER_01]: or the sibling or the coworker of the person who has some sort of, you know, diagnosis or unique need, right?

52:01.693 --> 52:09.604
[SPEAKER_01]: So I mean, I honestly I wake up every day in so much gratitude for just

52:09.584 --> 52:19.075
[SPEAKER_01]: knowing like, I think a lot of us, you know, are seeking our whole lives for for something to fill some kind of void, and I don't have that feeling.

52:19.115 --> 52:39.338
[SPEAKER_01]: And it's because of Arizona, though, you know, it is absolutely, she is absolutely the impetus, her coming through me as my child

52:40.904 --> 52:51.621
[SPEAKER_03]: That brings, I don't know, this is going to be a question asked in every episode, but I think I thought of this before because Laura and I have talked about it looking at Elijah.

52:52.983 --> 52:58.131
[SPEAKER_03]: If he were all of a sudden, if he were neurotypical, just like overnight, what would that mean?

52:58.331 --> 53:01.476
[SPEAKER_03]: So the question is, I'll go last.

53:01.516 --> 53:07.165
[SPEAKER_03]: Let's answer this, answer this, which is, where would you be, or what would life be like?

53:07.432 --> 53:16.851
[SPEAKER_03]: Without autism, because everything you just talked about us being here, we wouldn't be here doing this and I don't know if we would

53:17.236 --> 53:19.939
[SPEAKER_03]: Outside of my reason, I don't know if we would all know each other.

53:20.119 --> 53:25.925
[SPEAKER_03]: I don't and there's other people that you wouldn't necessarily know where would you be and what would life be like without autism.

53:25.945 --> 53:31.191
[SPEAKER_03]: For some people are going to hear this and just Depending on what they're carrying, they're just like, let me tell you how much better it would be.

53:31.211 --> 53:31.732
[SPEAKER_03]: I wouldn't have that.

53:31.772 --> 53:43.024
[SPEAKER_03]: I die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die die

53:45.265 --> 53:46.086
[SPEAKER_03]: No, but that's your challenge.

53:46.106 --> 53:49.269
[SPEAKER_03]: Just without the diagnosis.

53:50.830 --> 53:51.531
[SPEAKER_00]: Great question.

53:51.591 --> 53:51.911
[SPEAKER_00]: Don't know.

53:51.951 --> 53:53.012
[SPEAKER_00]: I know how to answer it.

53:53.313 --> 54:00.640
[SPEAKER_00]: I know there are things that there are things I see in my son.

54:00.700 --> 54:05.525
[SPEAKER_00]: That's not even the answer that question.

54:07.807 --> 54:08.367
[SPEAKER_00]: That's it.

54:08.387 --> 54:14.293
[SPEAKER_00]: That's, I don't even know if I want to answer that question to tell you the truth.

54:14.527 --> 54:15.669
[SPEAKER_00]: My life is my life.

54:16.451 --> 54:18.374
[SPEAKER_00]: And I am truly grateful for it.

54:18.434 --> 54:28.313
[SPEAKER_00]: And yes, it's been, it's had its difficulties, it's had its beauties, my 22 year old son still gives me kisses every day and still gives me hugs every day.

54:28.414 --> 54:31.219
[SPEAKER_00]: And if he were a neurotypical, I would not be getting that so.

54:31.553 --> 54:35.297
[SPEAKER_00]: And I love that when he comes up to me, he kisses the top of my ball of head.

54:36.138 --> 54:37.520
[SPEAKER_00]: He just is very affectionate.

54:38.020 --> 54:39.322
[SPEAKER_00]: And that would be gone.

54:39.542 --> 54:43.727
[SPEAKER_00]: Because my 25-year-old son, he loves me, but I ain't getting no kisses for him.

54:44.308 --> 54:45.149
[SPEAKER_00]: I ain't getting no.

54:45.169 --> 54:46.410
[SPEAKER_00]: And he kisses the top of my head.

54:46.510 --> 54:52.677
[SPEAKER_00]: So I just think I don't want to answer that question.

54:52.697 --> 54:54.219
[SPEAKER_00]: Because my life is my life.

54:54.359 --> 54:55.541
[SPEAKER_00]: I'm really grateful for it.

54:56.222 --> 55:00.126
[SPEAKER_00]: It's loaded with difficulties, it's loaded with beauty.

55:00.595 --> 55:15.955
[SPEAKER_03]: I'm I'm content so I but you did answer that that you did that isn't that that is an answer and for somebody listening they might feel like you know they would get

55:16.829 --> 55:22.477
[SPEAKER_03]: Kisses and affection, if there was, they may feel the other way around.

55:22.798 --> 55:24.861
[SPEAKER_00]: True, true, because I know that's very typical.

55:24.881 --> 55:30.248
[SPEAKER_00]: Sometimes a lot of kids with an autism bag are not affectionate, exactly.

55:30.268 --> 55:39.782
[SPEAKER_00]: And that may be, we didn't go the ABA route, we went the RDA kind of relational development therapy, as opposed to ABA.

55:40.184 --> 55:48.451
[SPEAKER_00]: and that was very much about connecting my son with the world emotionally and not some of the kind of the road practices of ABA.

55:48.672 --> 55:50.934
[SPEAKER_00]: So maybe that's a different, I don't know.

55:51.454 --> 55:54.337
[SPEAKER_03]: But I'm just saying that to say that there is no wrong answer and you're getting answer it.

55:54.877 --> 55:55.938
[SPEAKER_03]: So thank you.

55:56.078 --> 55:56.178
[SPEAKER_03]: Okay.

55:56.198 --> 55:59.021
[SPEAKER_03]: Who else is in there?

55:59.041 --> 56:10.191
[SPEAKER_01]: Well, I am going to respond to that with a little snapshot of last night

56:10.812 --> 56:25.762
[SPEAKER_01]: And this is going to make me a little emotional, okay, so just roll with me here, but she said to me, she said, Mama, I am so proud to be who I am, okay?

56:26.443 --> 56:31.453
[SPEAKER_01]: And she said, I'm going to be a role model to artistic girls.

56:31.552 --> 56:47.960
[SPEAKER_01]: Okay, and we're not even just, we're not even talking about anything, she was just, she loves to look at videos of other kiddos who have disabilities down syndrome or wheelchair user or whatever it is, and she just feels so like proud.

56:50.665 --> 56:56.395
[SPEAKER_01]: And so I think no matter what type of children.

56:57.623 --> 57:05.310
[SPEAKER_01]: I would be given in this lifetime and turns out I got this one, uh, I think that's all that matters to me.

57:08.393 --> 57:10.816
[SPEAKER_03]: Yeah, yeah, yeah.

57:12.077 --> 57:12.377
[SPEAKER_03]: Wow.

57:13.999 --> 57:14.359
[SPEAKER_03]: I love that.

57:15.220 --> 57:15.600
[SPEAKER_03]: I love that.

57:16.000 --> 57:23.968
[SPEAKER_03]: Um, and I think I realized something here today.

57:25.433 --> 57:27.136
[SPEAKER_03]: and thankful to both of you for it.

57:28.037 --> 57:35.990
[SPEAKER_03]: When Laura and I have asked the question, we've said, we've answered that question with a question, which is, what allows you to be the same?

57:37.813 --> 57:40.698
[SPEAKER_03]: Well, that's actually answered that with multiple questions, would you be the same?

57:41.960 --> 57:49.291
[SPEAKER_03]: It's obvious some of the things that we would gain with him being neurotypical, and some of it would welcome.

57:50.313 --> 57:52.757
[SPEAKER_03]: But the other question,

57:53.159 --> 58:03.631
[SPEAKER_03]: which you never know the answer to, I shouldn't say never, we don't know the answer to, which is, we don't know what we would lose, what would we lose, you know?

58:04.353 --> 58:07.202
[SPEAKER_03]: And everything you guys have just said here today, just,

58:08.178 --> 58:10.401
[SPEAKER_03]: Let's step you know and can you guys hear that at all?

58:10.421 --> 58:10.901
[SPEAKER_03]: Yes.

58:11.162 --> 58:11.842
[SPEAKER_03]: There it is.

58:11.882 --> 58:12.663
[SPEAKER_01]: Now it's okay.

58:12.683 --> 58:13.885
[SPEAKER_03]: Now it's okay.

58:13.905 --> 58:14.386
[SPEAKER_03]: Now it's okay.

58:14.406 --> 58:14.986
[SPEAKER_03]: Now it's okay.

58:15.006 --> 58:15.707
[SPEAKER_03]: Now it's okay.

58:15.887 --> 58:16.708
[SPEAKER_01]: Now it's okay.

58:16.728 --> 58:17.790
[SPEAKER_01]: Now it's okay.

58:17.810 --> 58:18.551
[SPEAKER_01]: Now it's okay.

58:19.111 --> 58:20.273
[SPEAKER_03]: Now it's okay.

58:20.293 --> 58:20.653
[SPEAKER_03]: Now it's okay.

58:20.673 --> 58:21.154
[SPEAKER_03]: Now it's okay.

58:21.174 --> 58:21.574
[SPEAKER_03]: Now it's okay.

58:21.634 --> 58:22.215
[SPEAKER_03]: Now it's okay.

58:22.235 --> 58:23.657
[SPEAKER_03]: Now it's okay.

58:23.677 --> 58:24.778
[SPEAKER_03]: Now it's okay.

58:25.859 --> 58:26.740
[SPEAKER_03]: Now it's okay.

58:26.760 --> 58:27.381
[SPEAKER_03]: Now it's okay.

58:27.461 --> 58:27.962
[SPEAKER_03]: Now it's okay.

58:28.022 --> 58:28.743
[SPEAKER_03]: Now it's okay.

58:28.843 --> 58:31.426
[SPEAKER_03]: Now it's okay.

58:31.606 --> 58:32.227
[SPEAKER_03]: Now it's okay.

58:32.307 --> 58:32.788
[SPEAKER_03]: Now it's okay.

58:32.948 --> 58:35.131
[SPEAKER_03]: Now it's okay.

58:35.151 --> 58:35.711
[SPEAKER_03]: Now it's okay.

58:35.791 --> 58:36.312
[SPEAKER_03]: Now it's okay.

58:37.000 --> 59:00.375
[SPEAKER_03]: You know, and then it makes you stop me in your own day and and so now I'm thinking back to my own last night where I'm working on stuff, you know, we're using a different provider for the recording of the podcast and I were having so much technical difficulty last night and I didn't rage, but I made that his problem, whereas just now I did go upstairs and I said, hey, but can you bring it down to an inside voice or whatever.

59:01.267 --> 59:27.595
[SPEAKER_03]: because he was because it was going for a long time and it and that's him being he's just happy and he's stimming um but wasn't that serious you know in a moment I felt like it but you know so what what we lose speaking of loss what we've lost here is time and what we gain is an episode as it brings us to the end and um

59:28.182 --> 59:35.777
[SPEAKER_03]: Kind of has me at the beginning because I'm just so grateful all over again for this opportunity for each of you to everyone and within the side of my voice.

59:35.797 --> 59:37.541
[SPEAKER_03]: I want to thank you guys for being here today.

59:37.581 --> 59:46.579
[SPEAKER_03]: The episodes going forth will consist of various combinations of the three of us and guess as well.

59:46.559 --> 59:52.689
[SPEAKER_03]: And we want to thank our friends at Billy Footwear, makers of adaptable footwear for all.

59:52.709 --> 59:55.553
[SPEAKER_03]: You click on the link in the show notes.

59:55.593 --> 59:58.918
[SPEAKER_03]: You get a percentage, 10% off your final price.

59:59.018 --> 01:00:02.784
[SPEAKER_03]: That includes any sale items that may be taking place.

01:00:03.305 --> 01:00:06.390
[SPEAKER_03]: If you or someone you know is a mail,

01:00:06.590 --> 01:00:17.789
[SPEAKER_03]: who is a dad or caregiver to someone with special needs or a diagnosis, elderly, whatever the case might be, feel free to join our men's group, the den we meet by weekly on Zoom.

01:00:18.230 --> 01:00:21.175
[SPEAKER_03]: The link will also be included in the show notes and it is free of charge.

01:00:22.377 --> 01:00:23.319
[SPEAKER_03]: Thank you, Maurice.

01:00:23.379 --> 01:00:24.120
[SPEAKER_03]: Thank you, Susanna.

01:00:24.581 --> 01:00:29.410
[SPEAKER_03]: And to everyone within the Son of my voice, thank you for joining us here on Beyond The Spectrum.

01:00:29.430 --> 01:00:31.433
[SPEAKER_03]: And we'll see you next time, we'll love you.