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Welcome to the podcast Beyond Expectations, Parenting Autism.
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Follow Michelle Shabola's journey of raising a child with autism, the challenges, victories, and rewards.
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If you're a parent, a caregiver, or simply someone seeking to understand autism on a personal level, you're in the right place.
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All right, here we are.
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Beyond Expectations with Michelle Shabola, Sean Dobson.
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And today our guest is Susanna Peace.
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Lavelle.
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Lavelle?
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How do you say your last name?
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I didn't even ask.
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Yes, yes.
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Emphasis on the word love.
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Yes.
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Love.
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There you go.
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And Susan, Susanna actually reached out to me, and I'm so happy she has her own podcast.
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She writes her own books and she's got a great story.
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So I'm going to let you introduce yourself.
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Okay.
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Well, so good to see you, uh, Michelle and Sean.
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And I'm all the way over here on the very west coast of the country in a little town called Los Angeles, California.
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And um my story begins with, you know, growing up in a big family and always wanting to be a mama.
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Um, it was like the biggest, most clearest, crystal clear conviction I've ever had in my life, which is I am going to be a mother.
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Um, however, that needs to happen, I'm going to be a mother.
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Um, and so I have been laser focused on that.
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Of course, you know, not um necessarily trying to be until it was the right time, but you know, just having this sense of just like a knowing deep within that I'm meant to be a mother.
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Um, in addition to a million other things, right?
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For sure, I'm meant to be a mother.
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That is my calling.
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Um, it's going to happen.
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And so, you know, I am a type of person who is very type A.
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Um, I like to, I like to be a little bit controlling about how things are going to be and how they work.
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And before I became a mother, I felt like, you know, I got this life.
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I know how to make things happen.
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I know that if I want to get into said university, I'm going to study really hard and get in.
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I know that if I want a particular job, I'm going to practice and interview and network and get that job.
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If I want a promotion, if I want a rate, whatever it is, I just feel I've always felt like, okay, I have so much agency, uh, insert control over um how my life is going to be.
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And, you know, the first time that I had any inkling that the world worked a little bit differently is when I became pregnant.
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Because now I'm pregnant.
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And by the way, my plan was working beautifully.
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Um, met somebody, we decided we were gonna get married a couple years later.
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We have since divorced, but three months after we got married, I was pregnant.
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I was like, see?
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I mean, this is how it works, people.
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Duh.
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And um, and I was so excited until I just started throwing up every day, all day.
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And that, you know, I was so sick, I was so nauseous, I just felt disgusting.
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I um ended up throwing up for like seven months, and everyone was like, Are you just are you so blissed out?
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And I was like, no, you know, but but also yes, like, yes, I'm so excited.
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I'm going to be a mama.
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And at the same time, I was like, but this has nothing to do with me.
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Like, I can't control not feeling sick and icky and not gaining 55 pounds, whatever it was, right?
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I don't, it's it's not about me.
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And so that little thought started creeping into my brain while I was pregnant.
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And certainly when Arizona was born, a week past her due date, by the way.
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Again, nothing to do with me.
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I'm like, can you get out?
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Get out.
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Um, and um, she was born and she just commanded a lot of attention right away.
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And she wasn't, you know, diagnosed with autism spectrum disorder, which ultimately happened when she was like two and a half, but she had crazy food allergies, she had asthma, she had so many things that required paying attention to.
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Um, and she was very vocal in her crying and she was very uncomfortable, you know.
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She was, she was, she was miserable.
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She was reacting and responding to things that were not good for her body.
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And, you know, you can't have a you know, conversation with a two-month-old about what's wrong.
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You know what I mean?
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Why are you crying?
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So it was just a lot of effort around doctor's appointments and lots of appointments around uh with professionals around, like, you know, she was breaking out an eczema all over her body.
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She was crying all the time.
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And I was in and out of the pediatrician and the gastroenterologist and the dermatologist and you know, holistic doctors, and all of the other fun things we have here uh readily available in Los Angeles for the low, low price of, right?
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Um, but I was so desperate, right?
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I just was like, I don't, this poor child is crying.
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And by the way, now I'm crying all day too, because I don't know how to help her and support her.
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Um, and this is not what I expected for new motherhood.
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Um, anyway, fast forward, she's now 20 years old.
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And along the way, turns out she had crazy severe allergies.
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Um, still, still does.
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That's a big part of our profile.
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Um, she was diagnosed officially with autism spectrum disorder, like I said, when she was about two and a half years old.
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A couple years later, when they could officially test her for ADHD, that came back, yep.
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And um, and then after that, it's just been this sort of ongoing journey and relationship with anxiety, you know, um, generalized anxiety disorder and you know, really perseverating around, you know, things that don't seem so important or dramatic to us, but for her could be, you know, just you know, let her go off into a tailspin and full-blown, you know, tantrum and episode as a as an adult, right?
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So I her name is Arizona, by the way.
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And um, you know, it's been a it's a been a journey.
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And so when I was going through when sort of I was in the trenches in the very beginning and sort of the deer in the headlight, I'm sure you both understand that part.
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Like, what is wait, what's happening?
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What's going on?
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I this is I'm not familiar with this right now.
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What is going on?
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Um, I just felt very, very isolated and very alone and very helpless and hopeless.
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And all of the, you know, so-called agency and tenacity that I had for my own life just sort of went out the window because I was like, nothing is working.
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I don't know what to do.
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Even getting support and resources for her.
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I mean, nowadays I feel like a lot of us are talking about neurodivergence and disability and certainly autism is household world, uh household word, right?
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ADHD.
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I mean, that's not so uncommon.
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Um, but back then, I mean, honestly, like when was that?
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Like 18 years ago when she was two, I did not know another family with um someone in the family who with autism or maybe ADD, I don't know.
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I never knew of a diagnosis, but we've just come such a long way, right?
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And I I I I wanted to create um something for parents that was something that I needed so badly when I was younger.
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And so um, when Arizona's father and I uh divorced, made the decision to get a divorce, she was about seven or eight.
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And I was like, okay, now I need to focus on building my own career.
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And um I had already been supporting families, just sort of like word of mouth, or just, you know, as you're sitting in the therapy uh waiting area, right?
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The waiting room, you're chatting with other families who're like, oh, well, do you know about this and this kind of work for us?
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And how about that?
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And so people started sending um referrals to me in terms of, hey, Susanna, you know, I have a cousin, her two-year-old and three-year-old is not really talking, their eye contact.
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Do you think you could help?
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And so I was already, you know, in that role of like, yes, how can I support you?
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You know, I'm really interested in doing so.
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So ultimately, I got, you know, certified as a professional life coach, and um I started, you know, building my business in terms of helping families, um, running connection circles or support circles.
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Those are all free offerings.
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Um, working with families, uh, sometimes on a sliding scale, sometimes, you know, my my rate, because I also need to support myself and my daughter, working with corporations and companies, putting together workshops, presentations, and then ultimately becoming a published author.
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But I I feel so fulfilled with my work because it's like my daily life, it's like my life and my work.
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It's a very, you know, enmeshed, like sort of integrative life, integrated life.
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And I get to create my schedule around my daughter's needs.
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Um, she lives with me full-time, and and you know, I know you both sort of listened to recent podcasts that I co-hosted around, you know, forever nester.
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Like, am I going to be an empty nester?
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I don't know.
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I I don't know, you know.
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Um do I think that's a possibility?
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I think so, maybe, but I don't know, you know.
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Um, so you know, people who who meet me nowadays are just like, oh, hey, what oh, you have a 20-year-old, uh, you're done.
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And I was like, I'm not done.
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What does that mean?
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You know what I mean?
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This fascinating, Susanna, to hear you talk because you and Michelle are almost sort of 10 years apart in your journey, right?
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Yes.
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Well, you're talking about the lack of resources that that were available for you uh when Arizona was diagnosed.
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Uh Michelle went through that, I guess, about 12 years earlier, 10, 12 years earlier.
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That's the whole point of this conversation, this podcast.
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Yes.
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So you wrote a book.
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Tell us the tell us sort of the motivation of the book, the process of the book, and and uh and how it's done, and and sort of what the overall goals are.
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Yeah, so I have two published works um now, and I had a dream the other night that I was working on my fourth.
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So I don't know what the third is gonna be or the fourth.
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Um, but just so you know, you heard it here first.
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Um the dream.
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You know how that one lady had a dream about Twilight and then made the movies, wrote the books and made the movies?
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Please.
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I'm like, I can I have a dream like that and make millions, please?
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Um so no, I've always been a writer.
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I've never I I started writing in a journal when I was 13 years old.
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I actually have every single journal I've ever written in since the age of 13.
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I am now 52.
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So um I'm on my 72nd journal.
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And to me, it has always been sort of like an instant, you know, therapeutic practice.
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Like just write it out, you know.
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I mean, obviously when I was 13, there weren't any computers, no smartphones, nothing like that, not even close.
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Like in college, we were kind of starting to dabble in email, but um, nowadays it's crazy if you see someone write, you know, pen to paper, if it's a young person, right?
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So, but either way, I I found it to be so therapeutic for me.
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It was how I was able to express myself, release my feelings, uh, feel heard and seen to myself.
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And um, and so I love the process of actually writing.
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And um I enjoy words.
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I was spelling bee champion in high school.
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I just, I really I just love everything about writing and reading in words.
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And um when I was going through a divorce, I started writing more about, you know, deeper feelings and you know what would I like to tell my younger self kind of thing.
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And I started off by writing an article and about, you know, how the unexpected motherhood that I was sort of thrust into, having a different kind of vision, um, different kind of motherhood than the vision that I had planned for.
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And, you know, and then I was like, you know what?
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I really want to tell my story.
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I want to share my story when I was going through this.
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There wasn't anyone else talking about it that I knew of.
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There, um, there certainly wasn't a guidebook.
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There wasn't a, you know, a roadmap or a blueprint.
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And I know that we have so many different stories.
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We come from so many different walks of life as disability parents.
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However, I just felt like if I can just help, you know, a few people, you know, feel less alone.
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So I started off writing and just dumping everything into this huge, you know, it was like 350 pages.
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And then I for me, that was, it was actually very necessary because I had to get it all out.
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And um, and then once I did that, I started working with a writing coach who was like, okay, so let's talk about, you know, what it's like writing for an audience as opposed to just releasing.
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And that was a process.
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And I will tell you, it took me 10 years to get this thing published because I would start writing and then I would like be in my office and start listening to like a cold play song or something and get so emotional and start crying, and then I would put it away for six months.
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And then, you know, I'd listen to something else and start sobbing.
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And I, it just was a very emotional write.
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Um, but it is, you know, it's a memoir of me raising my daughter, Arizona.
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And and then what I also included at the end of each chapter was sort of like a truth corner, like, okay, here's what I really feel.
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And then, you know, sort of like hints and tips for every stage of motherhood that I write about in the book.
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And then as I'm writing, writing, writing, Arizona's getting older, and she's like, You're writing a book about me.
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And I was like, Well, it's my story.
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You're in it, you know.
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And she was like, No, thanks.
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You know what I mean?
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And I was like, So we had to talk about, you know, because I need to take her, you know, her thoughts and feelings into consideration.
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Um, and so we had to go through that whole process and we came up with a compromise ultimately and eventually, which is she wouldn't allow her name to be in the book.
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So she's uh just called the letter A in the book.
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And the other compromise is that she was going to write the foreword.
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And by write the foreword, I mean she had a conversation with my writing coach, who then put those into words, right?
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And so one of the things it's amazing.
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And so one of the things that she said basically was like, this is what I want readers to know before they read this story that is about to be told by my mother.
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Wow, and one of the things one of the things that she said in that forward is, you know, um, yeah, this is it.
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My daughter A had some advice she wanted to share with readers of this book.
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Here are a few of her thoughts.
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And so one of those thoughts was your true self is enough.
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Um, you shouldn't have to change yourself to make other people happy.
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And so, and therefore, the title of my book is Your True Self is Enough, Lessons Learned on My Journey Parenting a Child with Autism.
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And um, you know, it's it's been well received, you know, it's not a deep, you know, heady read.
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It's you know, 112 whatever pages of like by the way, I know my audience, like who has time to read 500 pages, right?
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Um, you're in the midst of caregiving and right.
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Um and and then uh just this.
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So anyway, so I published that on my 50th birthday.
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I wanted to have like sort of this milestone.
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Yeah, it was really, I feel so proud of myself.
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Um, and then the second book, I'm I'm in an anthology called Suddenly Brave Together, and it's 30 letters to caregiving moms, basically from those of us who have uh children 18 years and older, written to that mom who's just received a diagnosis, you know.
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Oh, that's good.
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Yeah.
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And so I'm chapter 23 in that one.
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But um yeah, I just again, uh any way that I can help support my beloved community that I had no idea I was going to be a part of, I just feel so honored to do so.
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I I mean, it's like again, like we come from all different walks of life.
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Like you're in Texas, right?
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You're in New York, right?
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We and you know, we our kids might have you know different diagnosis.
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I happen to be a single mother.
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There's a mom who has an amazing, you know, partner who is so involved, and they have six other children, you know, it's again.
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Um, I have two cats, right?
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Um so Luna and Phoebe.
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And um well, I think that's that's part of that's part of I think what me encourage so the whole family encouraged Michelle to write a book.
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And and writing a book is intimidating, right?
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Because like you said, you have to start with everything and then we'll lit down, and it takes a process, and so we're uh we're not known for our patients in this family.
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So then we need to context, right?
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So here it's this, it's a more free form, we can kind of get right to it.
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Um she and Gregory have such an amazing story.
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But there's there's a lot of context to having a special needs child.
00:19:08.960 --> 00:19:10.480
And I and I'm just kind of learning, right?
00:19:10.559 --> 00:19:13.839
So Michelle's on the front line, and of course, we all know Gregory.
00:19:14.079 --> 00:19:19.279
Well, all of our relationships are very different, and our responsibilities are nothing compared to what we should do.
00:19:19.839 --> 00:19:26.880
But but I think that at some point, you know, we we often dodge topics because we cry what we can't, you know, right?
00:19:27.119 --> 00:19:31.839
But but there's there's especially as child, there's all the responsibility being that child care.
00:19:32.720 --> 00:19:35.759
But as we all know, right, you have a lot of different roles, right?
00:19:35.920 --> 00:19:48.240
So you have the role you have in your business and providing, and you have the role that you have as a spouse, and you have the role that you have as compared to another child that's not special nature, maybe multiple special age children.
00:19:48.480 --> 00:20:00.000
So I think that that that that parental role it would be fascinating to hear you guys talk about the what in what in social work they talk about as the self-care piece of this thing.
00:20:00.240 --> 00:20:09.039
Yeah, because in in uh we've been super fortunate um to be able to support a school social work and get through our business.
00:20:09.759 --> 00:20:17.599
And what we learned at sort of early stage was that the the social work get involved in such traumatic situations, right?
00:20:18.079 --> 00:20:25.839
Yes, yes, that they learn quickly that they're not taken care of and they're not able to take care of other people.
00:20:25.920 --> 00:20:31.440
So that's what I think the way they dumbed it down for me was you like on the airplane, you gotta put the back to it yourself first before you start.
00:20:31.920 --> 00:20:32.319
That's right.
00:20:33.519 --> 00:20:39.039
So how so maybe tell me both of you think about how do you take care of yourself through this whole process?
00:20:39.519 --> 00:20:40.720
Like, where do you find time?
00:20:40.799 --> 00:20:41.680
How do you find time?
00:20:41.759 --> 00:20:42.559
Where do you find time?
00:20:42.960 --> 00:20:45.440
You're just so low on the totem pole.
00:20:45.680 --> 00:20:47.759
I think it just if it happens, it happens.
00:20:47.839 --> 00:20:49.200
I I'm the worst about that.
00:20:49.359 --> 00:20:54.960
Um and you know, I was listening to her podcast today about what if you had to have surgery.
00:20:55.119 --> 00:20:58.240
I've have had just had a surgery, another surgery Friday.
00:20:58.319 --> 00:21:06.079
I've had three surgeries on my foot in the last three years, and it is very, very high anxiety about who's gonna be here for me.
00:21:06.240 --> 00:21:06.720
That's right.
00:21:06.960 --> 00:21:17.599
So thank goodness I have four siblings and one that lives within driving distance, and she gives up holidays, you know, takes time off to come and take care of me.
00:21:17.759 --> 00:21:23.759
And we were just talking about, I mean, the way y'all were talking about what if something major happens, which it does happen in families.
00:21:24.000 --> 00:21:25.359
What who's gonna step in?
00:21:25.519 --> 00:21:26.319
Who's gonna do that?
00:21:26.480 --> 00:21:28.559
And I'm a widow, so it's just me.
00:21:28.720 --> 00:21:32.000
Yeah, so a lot of it falls on my younger son.
00:21:32.079 --> 00:21:37.680
I have an amazing son that's um two years younger than Gregory, and he just steps up to the plate.
00:21:37.839 --> 00:21:38.799
I mean, he totally does.
00:21:38.880 --> 00:21:40.400
He just, Mom, where do I need to be?
00:21:40.480 --> 00:21:41.119
What do I need to do?
00:21:41.200 --> 00:21:42.319
But he's local.
00:21:42.720 --> 00:21:46.960
So um, I have a new replacement coming up in December and it's on his calendar.
00:21:47.039 --> 00:21:48.640
I'm like, you can't go hunting.
00:21:48.799 --> 00:21:55.759
You can't I at least need you for the day of surgery, and we'll see how the week goes.
00:21:55.839 --> 00:21:56.960
And he goes, I'll be here, mom.
00:21:57.200 --> 00:21:59.759
So he's got it, you know, wrapped up on his calendar, but it is.
00:22:00.319 --> 00:22:03.759
It's it's one of those things where you're I don't really worry about myself.
00:22:03.839 --> 00:22:06.400
I worry way more about Gregory than I do myself.
00:22:06.720 --> 00:22:07.359
I really do.
00:22:07.759 --> 00:22:09.680
But I think it's normal, don't you?
00:22:12.480 --> 00:22:20.799
I mean 1000%, but I'm just it's so interesting because we were just Sean was just talking about self-care, also, right?
00:22:20.960 --> 00:22:24.400
And here we are talking about surgery, right?
00:22:24.559 --> 00:22:27.359
And surgery, that's a necessity for you.
00:22:27.519 --> 00:22:30.559
That's a basic human human need for you.
00:22:30.640 --> 00:22:35.119
You have a medical issue and it needs to be fixed with surgery.
00:22:35.440 --> 00:22:39.839
So, so imagine we're having this anxiety about surgery.
00:22:40.480 --> 00:22:45.119
We're having this anxiety about I have anxiety sometimes about even just taking a shower.
00:22:45.200 --> 00:22:45.839
You know what I mean?
00:22:45.920 --> 00:22:47.359
And that is also a basic humanity.
00:22:47.519 --> 00:22:49.599
That is not self-care, right?
00:22:50.000 --> 00:22:59.200
So, so if we're having all of this anxiety and worry, um, how then do we just leap into see ya?
00:22:59.279 --> 00:23:03.039
I'm going to Turks and Caicos or whatever, whatever self-care is for you.
00:23:03.200 --> 00:23:07.920
I mean, that might not be self-care for for for someone, but it certainly would for me.
00:23:08.000 --> 00:23:09.200
I will tell you that.
00:23:09.440 --> 00:23:13.920
Um, I got to go on a trip because of my son, my younger son.
00:23:14.000 --> 00:23:15.200
That's how I got to go.
00:23:15.519 --> 00:23:16.400
Yeah, exactly.
00:23:16.559 --> 00:23:26.000
And we're so, aren't we so it take first of all, takes a couple of days to decompress and even realizing that nobody needs you in that moment.
00:23:26.640 --> 00:23:31.599
Um, and then you feel guilty sometimes, most of the time.
00:23:31.839 --> 00:23:47.839
And then you, you know, come back kind of like, and also it requires so much effort to plan for every minute of you being gone so that your adult child is taken care of every single need, you know?
00:23:48.079 --> 00:23:48.559
Absolutely.
00:23:48.799 --> 00:24:05.759
Um, so so self-care for me, I have, I have been able to really lean into just being so present in each moment and asking myself every single day, what does self-care look like for me today?
00:24:05.920 --> 00:24:12.319
Like, what does like real sort of taking care of my soul look like for me today?
00:24:12.559 --> 00:24:15.440
Um, how can I find little bits of joy?
00:24:15.680 --> 00:24:19.359
I just had a delicious Diet Coke right before I got on this podcast.
00:24:19.519 --> 00:24:23.839
To me, that was a quick, I don't drink coffee, but like like that's a quick little pick me up.
00:24:23.920 --> 00:24:25.039
It's fun, you know?
00:24:25.200 --> 00:24:28.559
And it's I just knew that I would be in a good mood.
00:24:28.640 --> 00:24:35.839
Well, I knew I was gonna be in a good mood with you too anyway, but just that extra little kick of a Diet Coke.
00:24:36.079 --> 00:24:52.160
And um, I have funding for cheating a little bit because I I saw a little bit of the podcast, and there was this question of feeling guilty of it's should I feel guilty that I want to have that I want to maybe want to be an indie nester and maybe I won't be an indie nestor.
00:24:52.319 --> 00:24:57.119
Should I feel guilty that I'm a little bit jealous of someone else's life because they're gonna be anesther?
00:24:57.279 --> 00:25:05.839
But but I guess I guess I don't really know how to how to ask the question, but at some point, if you're if you're not selfish, it all blows up.
00:25:05.920 --> 00:25:20.960
Like I can say in the in a work context, in a work context, I deal with this fairly frequently where you have a wonderful, wonderful contributor that you see working themselves to a point that they're gonna they're gonna become exhausted and end up quitting.
00:25:21.440 --> 00:25:27.200
And I have to sit them down and say, like, we appreciate it, but we need you here for 10 years, not for 10 months.
00:25:27.519 --> 00:25:31.599
And I've seen this pace, we've already done this pace, and we know it's not sustainable.
00:25:32.000 --> 00:25:38.480
So so like what advice would you have for those young moms to like to be a little, I mean, is it is it be a little selfish?
00:25:38.720 --> 00:25:41.039
Because this is a long-term project, right?
00:25:41.119 --> 00:25:44.799
This isn't this isn't something that's gonna get better tomorrow, right?
00:25:45.039 --> 00:25:47.119
Yeah, they're not gonna go off to college at 18.
00:25:47.279 --> 00:25:47.599
Right.
00:25:48.000 --> 00:25:50.720
No, not well, not in my case, not in your case, right?
00:25:50.960 --> 00:25:51.680
Yeah, right.
00:25:52.480 --> 00:25:53.440
How do you manage that?
00:25:53.519 --> 00:26:06.880
How do you how do you get yourself in a place to where you're where you're you're still able to have the fun you should have and have the and have the yeah the time for yourself that you need while you have such a huge responsibility?
00:26:07.279 --> 00:26:07.839
I don't know.
00:26:08.079 --> 00:26:11.839
Don't until the yeah, I mean if we if that's the wrong answer.
00:26:12.000 --> 00:26:15.680
So we should surgery with another guess for both.
00:26:16.720 --> 00:26:18.000
I have low blood pressure.
00:26:18.160 --> 00:26:20.240
Um I I had high blood pressure going in.
00:26:20.319 --> 00:26:23.680
They looked at me and I was worried about, you know, I'm just worried about what's going on.
00:26:23.759 --> 00:26:24.640
Where where is he?
00:26:24.799 --> 00:26:25.599
You know, I don't know.
00:26:25.680 --> 00:26:26.240
I can't answer.
00:26:28.400 --> 00:26:37.599
I I think that I think that we have to first acknowledge that um that it is not guilty to put ourselves first.
00:26:37.759 --> 00:26:42.000
Let's just talk about that tiny little piece, which is not a tiny piece, it's a big piece.
00:26:42.240 --> 00:26:49.519
And then to lean into um who we are as as these long-term caregivers, right?
00:26:49.599 --> 00:26:53.039
And and with caregiver burnout, you know, on repeat.
00:26:53.200 --> 00:27:08.240
Um it to have so much compassion for ourselves, I think for me, has been the key to getting over that little hurdle of not feeling so guilty and not feeling like my joy and happiness does not matter.
00:27:08.559 --> 00:27:11.359
I I feel like it matters so much.
00:27:11.519 --> 00:27:18.880
I actually still have the ability tremendously, tremendously how effective you're gonna be as a caregiver.
00:27:19.759 --> 00:27:23.599
Yes, yes, yes, yes, yes, yes, and a human being.
00:27:23.759 --> 00:27:30.960
And um, but I I I I have found it to be almost non-negotiable now um in my days.
00:27:31.039 --> 00:27:36.880
And some days I can't access it when there's like a there's an emergency happening where I have to be so physically present, right?
00:27:36.960 --> 00:27:41.200
My daughter's having an accident or issue or something, right?
00:27:41.440 --> 00:27:45.920
I have to be so present, I I have to forego my needs in that moment.
00:27:46.480 --> 00:27:51.039
And there are ways to just integrate into our own lives.
00:27:51.119 --> 00:27:54.160
Like, I have to cut out 30 minutes of my time.
00:27:54.480 --> 00:28:02.079
I cannot take that call from my friend who's so amazing that I know is just gonna talk about her neurotypical teenagers the whole time.
00:28:02.319 --> 00:28:03.039
Whatever it is.
00:28:03.119 --> 00:28:04.960
I mean, fill in the blank, right?
00:28:05.039 --> 00:28:10.240
Like I I I just made the decision that my family's in Ohio, right?
00:28:10.319 --> 00:28:14.400
And I have come from a big I have four siblings too, and I love my family.
00:28:14.480 --> 00:28:15.839
Everyone lives so far away.
00:28:15.920 --> 00:28:19.039
I'm so sad that we don't live closer.
00:28:19.279 --> 00:28:21.759
Um, and they all have tons of kiddos.
00:28:22.079 --> 00:28:34.319
And I just made the decision that I cannot go to Ohio for Thanksgiving because my daughter's schedule only allows her to take Thursday and Friday off that week as opposed to before when she was in her high school program.
00:28:34.480 --> 00:28:36.079
It was she had the entire week off.
00:28:36.160 --> 00:28:38.480
So then we could come on a Tuesday, it's not so crowded.
00:28:38.720 --> 00:28:48.799
It is not going to be self-care for me to traipse across the country during Thanksgiving week with my daughter, even as much as I want to see my family.
00:28:48.880 --> 00:28:53.119
So I had to make that decision to say, no, I can't do that, right?
00:28:53.279 --> 00:29:00.400
But that is going to be so supportive for me in the long run because I'm not going to be frazzled and fried.
00:29:00.480 --> 00:29:04.000
I will see my family in December and then we can stay for longer.
00:29:04.079 --> 00:29:11.359
And then it's not going to be I I'm just saying, like I have to check in with myself at every single turn.
00:29:11.519 --> 00:29:13.039
Does this work for me?
00:29:13.440 --> 00:29:13.839
Yes.
00:29:14.000 --> 00:29:15.519
Does it not work for me?
00:29:15.759 --> 00:29:16.079
No.
00:29:16.480 --> 00:29:20.640
Um, and you know, I've been able to build a little team of helpers.
00:29:20.799 --> 00:29:24.240
I've been able to get funding for said helpers, right?
00:29:24.640 --> 00:29:28.079
Um absolutely home.
00:29:28.720 --> 00:29:30.000
Yes, Sean.
00:29:30.559 --> 00:29:34.720
And even out in the community, like community living support.
00:29:34.880 --> 00:29:42.799
Let's go, you know, I have helpers who will come and take Arizona and they'll go to the mall and they can talk, they work on social skills, anyhow.
00:29:42.960 --> 00:29:43.279
Yes.
00:29:43.839 --> 00:29:44.799
No, but this is important.
00:29:45.279 --> 00:29:55.119
This is this is where we get into like those little factories that I find fascinating because you guys probably had to find them on your own, and maybe we could provide that you guys can provide a shortcut with someone.
00:29:55.200 --> 00:29:58.640
So maybe just if you don't mind, like what's the technical process?
00:29:58.720 --> 00:30:01.359
Is this different in California than it would be in Texas?
00:30:01.680 --> 00:30:05.519
Well, I'll tell you how, yeah, that's that's an excellent question.
00:30:05.599 --> 00:30:08.400
And by the way, it was not an easy feat.
00:30:08.559 --> 00:30:23.279
It it required a lot of tenacity and advocacy and being a squeaky wheel, which by the way, I know not everybody wants feels comfortable doing that, but I was so desperate for support that could help me.
00:30:24.319 --> 00:30:27.519
Um, that could also be supportive for Arizona.
00:30:27.680 --> 00:30:30.720
But I was the first one in my train of thought.
00:30:30.880 --> 00:30:33.920
Like, how can I just have a little respite?
00:30:34.400 --> 00:30:34.799
You know?
00:30:35.359 --> 00:30:38.720
Um, and so we have regional centers here in California.
00:30:38.880 --> 00:30:45.279
Arizona has been a client of the West Side Regional Center since she was two and a half when she was first diagnosed with autism.
00:30:45.519 --> 00:30:54.720
There are vendors and support um modalities that help her get, you know, the therapy she needs, social skills groups, things like that.
00:30:54.960 --> 00:31:01.440
A few years ago, I moved into what is called self-determination program, SDP.
00:31:02.079 --> 00:31:08.559
And so I don't know what other states have SDP, but let's talk about this for a second.
00:31:08.720 --> 00:31:25.039
So basically, all of the funding that Arizona was able to get through the regional center, because I was having a hard time finding vendors that were perfect for her, because like the social skills groups were always like all boys and she wanted to be with girls, you know, understandably.
00:31:25.279 --> 00:31:36.000
So and um, and so self-determination allows me to take the dollars that used to fund all of the the other services vendored through the regional center.
00:31:36.079 --> 00:31:40.400
And now I can find my own vendors for community living support.
00:31:40.480 --> 00:31:46.640
I can find employees, um, you know, 25 bucks an hour,$30 an hour, whatever it is.
00:31:46.799 --> 00:31:53.039
There are college students who have siblings on the spectrum who are or who have disabilities.
00:31:53.200 --> 00:31:57.519
And I will, it's like I have that spidey sense.
00:31:57.599 --> 00:31:59.839
Like I will meet them out in the wild.
00:32:00.000 --> 00:32:03.279
And then they have to go through this whole vetting process of working.
00:32:03.440 --> 00:32:07.279
There's one uh uh college student who works with us.
00:32:07.440 --> 00:32:16.799
Her brother in Arizona were on the same um uh special needs soccer league team for for years, and she would always come to the matches.
00:32:16.880 --> 00:32:20.720
And I was like, and once I got this funding, I was like, excuse me.
00:32:21.359 --> 00:32:27.440
Hello, you know, and it is it's like I don't even have to train her.
00:32:27.759 --> 00:32:33.119
She knows so much her patience, her understanding, like so.
00:32:33.359 --> 00:32:36.400
I um she came the other day and I went out to dinner.
00:32:36.640 --> 00:32:38.319
Hello, you know.
00:32:39.039 --> 00:32:55.440
Um, I I I mean, I, you know, and then when Arizona's in various school programs, um, then I can, you know, either do my work as I need to do my work, or I will schedule, you know, I'll go run around on a tennis court and whack a ball, you know.
00:32:56.000 --> 00:32:58.000
That is very not pickleball.
00:32:58.319 --> 00:32:58.960
Tennis.
00:32:59.839 --> 00:33:00.799
Real pickleball.
00:33:01.359 --> 00:33:16.079
I'm just saying, finding the thing, and then I can get to be with all these other ladies who love to play tennis, and my life feels so much different than theirs most of the time, because you know, I am not a lady who lunches.
00:33:16.160 --> 00:33:21.279
However, every once in a while I can be a lady who lunches one day, you know?
00:33:22.880 --> 00:33:24.319
So I feel normal, Sean.
00:33:24.960 --> 00:33:27.119
The self-determination, yeah.
00:33:27.359 --> 00:33:29.920
STP self-determination program.
00:33:30.240 --> 00:33:31.200
And let's, you know what?
00:33:31.279 --> 00:33:33.839
Let's a national thing or is that just a California?
00:33:34.640 --> 00:33:36.079
I'll have to Google it and find out.
00:33:36.319 --> 00:33:42.319
You're putting me on the spot, but I let's brainstorm, let's research this together because it has been life-changing.
00:33:42.480 --> 00:33:44.640
It has been life-changing for me.
00:33:45.119 --> 00:33:46.960
Um I've never heard of it.
00:33:47.039 --> 00:33:47.599
That's amazing.
00:33:47.839 --> 00:33:48.400
That's amazing.
00:33:48.480 --> 00:33:57.440
I live in a really small town, and um, I moved from a fairly larger town, but the support I had were the kids that he went to school with.
00:33:57.519 --> 00:34:03.680
They'd pick him up, take him to the movie, or take him somewhere, even as a senior and um or through high school.
00:34:03.759 --> 00:34:04.640
And I really missed that.
00:34:04.799 --> 00:34:06.720
It was it was just so good for him.
00:34:06.880 --> 00:34:11.920
It was just doing the normal thing, you know, it was it was a lot of fun.
00:34:12.079 --> 00:34:20.159
And I can trust them because they were usually the ones in school that were with him, you know, not with him, but you know, new him and were part of the the programs at school.
00:34:20.239 --> 00:34:21.119
So it was kind of cool.
00:34:21.360 --> 00:34:23.760
And does that help like if you do want to take a vacation?
00:34:23.840 --> 00:34:27.599
I I I've seen these these businesses advertised as respite care.
00:34:28.320 --> 00:34:31.679
So they're they're for people with all spectrums of needs.
00:34:31.920 --> 00:34:40.159
But the whole idea, I love the idea because the idea is that we'll take care of your loved ones so that you can you can go and actually get a break and take a breather.
00:34:41.039 --> 00:34:44.239
So you ever did you guys have your have you ever looked into those services?
00:34:44.880 --> 00:34:48.960
It's kind of yeah, it's kind of like the same thing.
00:34:49.119 --> 00:34:51.599
I just have multiple staff folks.
00:34:51.760 --> 00:35:00.639
I mean, when if I do go on vacation, well, I will also say my daughter has a father as well, um, who is in the picture for sure.
00:35:00.800 --> 00:35:03.679
He's very generous and kind and loving.
00:35:03.920 --> 00:35:05.840
She just lives with me full time.
00:35:06.159 --> 00:35:10.800
So um I can, you know, schedule sometimes.
00:35:10.880 --> 00:35:12.559
He's very busy and he travels a lot.
00:35:12.639 --> 00:35:20.320
So I have to organize and schedule um for support if I'm out of town for a couple of days.
00:35:20.480 --> 00:35:25.760
But typically I have, you know, girlfriends who will take turns that she's known since she was born.
00:35:25.920 --> 00:35:26.639
You know what I mean?
00:35:26.800 --> 00:35:30.719
And you know, her food stuff is still a big thing because of all her allergies.
00:35:30.880 --> 00:35:43.039
So I'm I'm cooking ahead of time and putting together all these little Tupperwares of her her meals so that it's easier for the so building that building that local network.
00:35:43.599 --> 00:35:48.480
Yes, building um my my tribe, seriously.
00:35:49.519 --> 00:35:53.760
And I think Tom, that's where it kind of was hard because we moved here when he was a senior.
00:35:53.920 --> 00:36:01.679
So that tribe I had was in Colorado, and that was the tribe that knew him from gosh, before he even spoke, right?
00:36:02.480 --> 00:36:05.840
Those are the big, those are like the the really big, big decisions that people make.
00:36:06.000 --> 00:36:12.480
I mean, so like moving away from that infrastructure is a huge and that's where you meet, right?
00:36:12.559 --> 00:36:17.679
You meet your kids, you meet your friends or your kids' parents, or your kids' friends' parents, right?
00:36:18.000 --> 00:36:18.880
Yeah, I knew exactly what you're doing.
00:36:19.920 --> 00:36:20.880
Exactly, exactly.
00:36:21.119 --> 00:36:29.119
And you feel comfortable leaving them at their like Jane, you know, uh my best friend and I moved away from each other, and it was nothing for us to leave our kids with each other.
00:36:29.199 --> 00:36:33.440
And Gregory was right in there with them because they knew him since he was, you know, a baby.
00:36:33.679 --> 00:36:40.400
And when you lose that tribe, it's I feel like I've isolated it's because we are kind of out here by ourselves, but we we do fine.
00:36:40.800 --> 00:36:41.679
We do all right.
00:36:42.159 --> 00:36:56.079
Yeah, um I feel like we can't give people enough, or you guys can't give people enough information, and I think um I would say sort of permission to go put themselves first more.
00:36:56.320 --> 00:36:59.039
Yes, seems like that's it seems like that's the black hole.
00:36:59.199 --> 00:37:00.960
Yes, the black hole you get into.
00:37:01.119 --> 00:37:07.920
It is well, I know because at our age, Sean, even though you're younger than me, she's way younger than us, people are retiring.
00:37:08.079 --> 00:37:09.199
People are retiring now.
00:37:09.280 --> 00:37:10.000
What are they doing?
00:37:10.079 --> 00:37:11.519
They're traveling all the time.
00:37:11.679 --> 00:37:18.320
They just pick up, they just pick up and go, and you're just like and I do, I pick up and go, but I take Gregory with me.
00:37:18.480 --> 00:37:29.679
We do travel together, so that's well, you're I mean, all the work you did, and I think that that I always think about the young, like I said, the young parents who just got the diagnosis and they're like, what the heck?
00:37:30.000 --> 00:37:30.960
Yes, that's right.
00:37:32.960 --> 00:37:40.400
Like that, hey, you might not be super outgoing, you might not used to be being that sort of tiger mom personality, right?
00:37:41.199 --> 00:37:49.760
And you might not sort of think about in advance of like of the of the infrastructure you need when they're 15, 18, 20, 25.
00:37:52.880 --> 00:37:57.360
Do what you do have to get a little mean, a little aggressive sometimes, don't you, Susannah?
00:37:57.440 --> 00:37:59.920
You you have to to be the advocate for them.
00:38:00.000 --> 00:38:00.559
You really do.
00:38:00.800 --> 00:38:05.920
Yeah, and I always, I mean, I try to do it with a smile, but I'm I'm not playing around.
00:38:06.079 --> 00:38:09.440
Like, please, you know, help.
00:38:10.159 --> 00:38:10.559
Yeah.
00:38:11.039 --> 00:38:11.199
Right.
00:38:12.159 --> 00:38:16.239
But I think also the second part of that is is in that long-range planning thing.
00:38:16.320 --> 00:38:19.039
And I know not having that myself.
00:38:21.920 --> 00:38:27.280
But I we've just watched the work that Michelle's done to make Gregory as independent as he can be.
00:38:28.320 --> 00:38:34.079
And and I think that independence means that um that you know I took him on a mission trip.
00:38:34.400 --> 00:38:46.800
And so all of a sudden, him being with me for two or three or four days was possible because of all of the listing out those life skills that you have to work on every day.
00:38:46.960 --> 00:38:53.280
Like that's a little bit of the goal at the end is everyone gets to have a little bit more of an independent life.
00:38:53.519 --> 00:38:55.840
All that work is done early, early on.
00:38:56.159 --> 00:39:07.920
And in that plan of like, what's gonna help this person, this special needs person, become as independent as they're not always gonna reach the same level independent, but to make sure that they maximize it.
00:39:08.320 --> 00:39:09.280
Yeah, definitely.
00:39:10.880 --> 00:39:13.360
That that was that's our goal.
00:39:13.679 --> 00:39:16.639
That was really beautiful what you said, Sean.
00:39:17.679 --> 00:39:23.360
Yeah, and while we were talking, I print chat you told me that there's a there's a service.
00:39:24.960 --> 00:39:32.639
Applied selfdirection.com that has gone through and the names and the details of each state's version.
00:39:32.960 --> 00:39:35.039
Hey now, there you go.
00:39:35.280 --> 00:39:45.599
Applied what applied selfdirection.com seems to be the resource that you would go to in any, and they will tell you about your state's version of the self-direction program.
00:39:46.400 --> 00:39:46.960
There you go.
00:39:47.199 --> 00:39:51.599
Okay for help for you and that's good to know.
00:39:52.159 --> 00:39:52.719
Love it.
00:39:53.920 --> 00:39:55.519
Good to know for both of our podcasts.
00:39:56.159 --> 00:39:57.199
It's very nice to be you.
00:39:57.280 --> 00:39:58.320
I will definitely read you books.
00:39:59.360 --> 00:40:00.559
Yes, definitely.
00:40:00.960 --> 00:40:02.719
So good now.
00:40:02.880 --> 00:40:04.400
Remember, three comes before four.
00:40:04.480 --> 00:40:06.639
Now you dreamed about book number four.
00:40:06.880 --> 00:40:08.639
I know three.
00:40:08.960 --> 00:40:11.360
Okay, gotta get gotta get on it.
00:40:12.159 --> 00:40:14.559
Maybe number three is about how to take care of the mom.
00:40:17.519 --> 00:40:21.920
In process, work in progress, but yes, totally, yeah, totally, absolutely.
00:40:22.079 --> 00:40:23.360
So thank you so much.
00:40:24.320 --> 00:40:25.199
Thank you both.
00:40:25.440 --> 00:40:26.719
Thank you both so much.
00:40:27.599 --> 00:40:29.039
Thank you for doing the help people.
00:40:29.760 --> 00:40:31.280
All right, okay, take care.
00:00:00.560 --> 00:00:05.679
Welcome to the podcast Beyond Expectations, Parenting Autism.
00:00:06.000 --> 00:00:11.919
Follow Michelle Shabola's journey of raising a child with autism, the challenges, victories, and rewards.
00:00:12.080 --> 00:00:19.280
If you're a parent, a caregiver, or simply someone seeking to understand autism on a personal level, you're in the right place.
00:00:20.559 --> 00:00:21.760
All right, here we are.
00:00:22.000 --> 00:00:25.120
Beyond Expectations with Michelle Shabola, Sean Dobson.
00:00:25.280 --> 00:00:27.359
And today our guest is Susanna Peace.
00:00:27.519 --> 00:00:28.000
Lavelle.
00:00:28.239 --> 00:00:28.640
Lavelle?
00:00:28.719 --> 00:00:29.440
How do you say your last name?
00:00:29.519 --> 00:00:30.160
I didn't even ask.
00:00:30.480 --> 00:00:31.120
Yes, yes.
00:00:31.359 --> 00:00:32.960
Emphasis on the word love.
00:00:33.119 --> 00:00:33.359
Yes.
00:00:33.759 --> 00:00:34.000
Love.
00:00:34.079 --> 00:00:34.799
There you go.
00:00:34.960 --> 00:00:40.000
And Susan, Susanna actually reached out to me, and I'm so happy she has her own podcast.
00:00:40.159 --> 00:00:42.479
She writes her own books and she's got a great story.
00:00:42.560 --> 00:00:44.799
So I'm going to let you introduce yourself.
00:00:45.840 --> 00:00:46.159
Okay.
00:00:46.399 --> 00:00:49.759
Well, so good to see you, uh, Michelle and Sean.
00:00:50.000 --> 00:00:59.520
And I'm all the way over here on the very west coast of the country in a little town called Los Angeles, California.
00:01:00.399 --> 00:01:08.000
And um my story begins with, you know, growing up in a big family and always wanting to be a mama.
00:01:08.480 --> 00:01:18.239
Um, it was like the biggest, most clearest, crystal clear conviction I've ever had in my life, which is I am going to be a mother.
00:01:18.400 --> 00:01:21.599
Um, however, that needs to happen, I'm going to be a mother.
00:01:21.760 --> 00:01:25.120
Um, and so I have been laser focused on that.
00:01:25.280 --> 00:01:38.159
Of course, you know, not um necessarily trying to be until it was the right time, but you know, just having this sense of just like a knowing deep within that I'm meant to be a mother.
00:01:38.239 --> 00:01:40.879
Um, in addition to a million other things, right?
00:01:41.040 --> 00:01:43.040
For sure, I'm meant to be a mother.
00:01:43.120 --> 00:01:44.239
That is my calling.
00:01:44.400 --> 00:01:46.159
Um, it's going to happen.
00:01:46.480 --> 00:01:53.840
And so, you know, I am a type of person who is very type A.
00:01:54.799 --> 00:02:03.519
Um, I like to, I like to be a little bit controlling about how things are going to be and how they work.
00:02:03.920 --> 00:02:09.199
And before I became a mother, I felt like, you know, I got this life.
00:02:09.439 --> 00:02:11.599
I know how to make things happen.
00:02:11.919 --> 00:02:17.919
I know that if I want to get into said university, I'm going to study really hard and get in.
00:02:18.159 --> 00:02:25.120
I know that if I want a particular job, I'm going to practice and interview and network and get that job.
00:02:25.280 --> 00:02:38.639
If I want a promotion, if I want a rate, whatever it is, I just feel I've always felt like, okay, I have so much agency, uh, insert control over um how my life is going to be.
00:02:39.120 --> 00:02:51.199
And, you know, the first time that I had any inkling that the world worked a little bit differently is when I became pregnant.
00:02:51.439 --> 00:02:52.960
Because now I'm pregnant.
00:02:53.120 --> 00:02:55.439
And by the way, my plan was working beautifully.
00:02:55.599 --> 00:02:59.759
Um, met somebody, we decided we were gonna get married a couple years later.
00:03:00.080 --> 00:03:03.520
We have since divorced, but three months after we got married, I was pregnant.
00:03:03.599 --> 00:03:04.479
I was like, see?
00:03:05.039 --> 00:03:08.000
I mean, this is how it works, people.
00:03:08.400 --> 00:03:08.879
Duh.
00:03:09.599 --> 00:03:17.360
And um, and I was so excited until I just started throwing up every day, all day.
00:03:17.520 --> 00:03:23.120
And that, you know, I was so sick, I was so nauseous, I just felt disgusting.
00:03:23.439 --> 00:03:30.879
I um ended up throwing up for like seven months, and everyone was like, Are you just are you so blissed out?
00:03:31.039 --> 00:03:38.560
And I was like, no, you know, but but also yes, like, yes, I'm so excited.
00:03:38.719 --> 00:03:40.479
I'm going to be a mama.
00:03:40.719 --> 00:03:44.000
And at the same time, I was like, but this has nothing to do with me.
00:03:44.159 --> 00:03:51.039
Like, I can't control not feeling sick and icky and not gaining 55 pounds, whatever it was, right?
00:03:51.280 --> 00:03:53.520
I don't, it's it's not about me.
00:03:53.680 --> 00:03:58.639
And so that little thought started creeping into my brain while I was pregnant.
00:03:58.879 --> 00:04:03.759
And certainly when Arizona was born, a week past her due date, by the way.
00:04:03.840 --> 00:04:05.199
Again, nothing to do with me.
00:04:05.280 --> 00:04:06.800
I'm like, can you get out?
00:04:07.360 --> 00:04:08.159
Get out.
00:04:08.800 --> 00:04:15.599
Um, and um, she was born and she just commanded a lot of attention right away.
00:04:15.840 --> 00:04:30.160
And she wasn't, you know, diagnosed with autism spectrum disorder, which ultimately happened when she was like two and a half, but she had crazy food allergies, she had asthma, she had so many things that required paying attention to.
00:04:30.319 --> 00:04:35.680
Um, and she was very vocal in her crying and she was very uncomfortable, you know.
00:04:35.839 --> 00:04:38.240
She was, she was, she was miserable.
00:04:38.399 --> 00:04:42.079
She was reacting and responding to things that were not good for her body.
00:04:42.240 --> 00:04:48.480
And, you know, you can't have a you know, conversation with a two-month-old about what's wrong.
00:04:48.639 --> 00:04:49.279
You know what I mean?
00:04:49.360 --> 00:04:50.720
Why are you crying?
00:04:50.959 --> 00:05:04.000
So it was just a lot of effort around doctor's appointments and lots of appointments around uh with professionals around, like, you know, she was breaking out an eczema all over her body.
00:05:04.160 --> 00:05:05.519
She was crying all the time.
00:05:05.680 --> 00:05:21.680
And I was in and out of the pediatrician and the gastroenterologist and the dermatologist and you know, holistic doctors, and all of the other fun things we have here uh readily available in Los Angeles for the low, low price of, right?
00:05:22.160 --> 00:05:24.480
Um, but I was so desperate, right?
00:05:24.639 --> 00:05:28.560
I just was like, I don't, this poor child is crying.
00:05:28.720 --> 00:05:34.720
And by the way, now I'm crying all day too, because I don't know how to help her and support her.
00:05:34.879 --> 00:05:40.639
Um, and this is not what I expected for new motherhood.
00:05:40.879 --> 00:05:45.040
Um, anyway, fast forward, she's now 20 years old.
00:05:45.360 --> 00:05:49.199
And along the way, turns out she had crazy severe allergies.
00:05:49.279 --> 00:05:50.800
Um, still, still does.
00:05:50.959 --> 00:05:53.040
That's a big part of our profile.
00:05:53.519 --> 00:05:59.920
Um, she was diagnosed officially with autism spectrum disorder, like I said, when she was about two and a half years old.
00:06:00.079 --> 00:06:06.079
A couple years later, when they could officially test her for ADHD, that came back, yep.
00:06:06.639 --> 00:06:37.680
And um, and then after that, it's just been this sort of ongoing journey and relationship with anxiety, you know, um, generalized anxiety disorder and you know, really perseverating around, you know, things that don't seem so important or dramatic to us, but for her could be, you know, just you know, let her go off into a tailspin and full-blown, you know, tantrum and episode as a as an adult, right?
00:06:38.160 --> 00:06:42.240
So I her name is Arizona, by the way.
00:06:42.560 --> 00:06:47.759
And um, you know, it's been a it's a been a journey.
00:06:47.920 --> 00:06:57.759
And so when I was going through when sort of I was in the trenches in the very beginning and sort of the deer in the headlight, I'm sure you both understand that part.
00:06:57.920 --> 00:07:00.240
Like, what is wait, what's happening?
00:07:00.480 --> 00:07:01.360
What's going on?
00:07:01.439 --> 00:07:03.920
I this is I'm not familiar with this right now.
00:07:04.079 --> 00:07:05.360
What is going on?
00:07:05.600 --> 00:07:13.279
Um, I just felt very, very isolated and very alone and very helpless and hopeless.
00:07:13.519 --> 00:07:22.879
And all of the, you know, so-called agency and tenacity that I had for my own life just sort of went out the window because I was like, nothing is working.
00:07:23.040 --> 00:07:24.959
I don't know what to do.
00:07:25.279 --> 00:07:28.240
Even getting support and resources for her.
00:07:28.399 --> 00:07:42.079
I mean, nowadays I feel like a lot of us are talking about neurodivergence and disability and certainly autism is household world, uh household word, right?
00:07:42.399 --> 00:07:43.360
ADHD.
00:07:43.439 --> 00:07:45.360
I mean, that's not so uncommon.
00:07:45.600 --> 00:07:49.839
Um, but back then, I mean, honestly, like when was that?
00:07:49.920 --> 00:08:01.600
Like 18 years ago when she was two, I did not know another family with um someone in the family who with autism or maybe ADD, I don't know.
00:08:01.759 --> 00:08:06.639
I never knew of a diagnosis, but we've just come such a long way, right?
00:08:06.800 --> 00:08:18.879
And I I I I wanted to create um something for parents that was something that I needed so badly when I was younger.
00:08:19.040 --> 00:08:27.920
And so um, when Arizona's father and I uh divorced, made the decision to get a divorce, she was about seven or eight.
00:08:28.160 --> 00:08:32.960
And I was like, okay, now I need to focus on building my own career.
00:08:33.600 --> 00:08:42.000
And um I had already been supporting families, just sort of like word of mouth, or just, you know, as you're sitting in the therapy uh waiting area, right?
00:08:42.159 --> 00:08:47.600
The waiting room, you're chatting with other families who're like, oh, well, do you know about this and this kind of work for us?
00:08:47.679 --> 00:08:48.399
And how about that?
00:08:48.559 --> 00:09:00.639
And so people started sending um referrals to me in terms of, hey, Susanna, you know, I have a cousin, her two-year-old and three-year-old is not really talking, their eye contact.
00:09:00.799 --> 00:09:01.519
Do you think you could help?
00:09:01.679 --> 00:09:07.120
And so I was already, you know, in that role of like, yes, how can I support you?
00:09:07.279 --> 00:09:10.320
You know, I'm really interested in doing so.
00:09:10.559 --> 00:09:24.639
So ultimately, I got, you know, certified as a professional life coach, and um I started, you know, building my business in terms of helping families, um, running connection circles or support circles.
00:09:24.799 --> 00:09:26.879
Those are all free offerings.
00:09:27.200 --> 00:09:44.159
Um, working with families, uh, sometimes on a sliding scale, sometimes, you know, my my rate, because I also need to support myself and my daughter, working with corporations and companies, putting together workshops, presentations, and then ultimately becoming a published author.
00:09:44.240 --> 00:09:52.240
But I I feel so fulfilled with my work because it's like my daily life, it's like my life and my work.
00:09:52.639 --> 00:10:00.080
It's a very, you know, enmeshed, like sort of integrative life, integrated life.
00:10:00.399 --> 00:10:05.679
And I get to create my schedule around my daughter's needs.
00:10:05.919 --> 00:10:14.799
Um, she lives with me full-time, and and you know, I know you both sort of listened to recent podcasts that I co-hosted around, you know, forever nester.
00:10:15.039 --> 00:10:16.799
Like, am I going to be an empty nester?
00:10:17.039 --> 00:10:17.679
I don't know.
00:10:17.840 --> 00:10:19.759
I I don't know, you know.
00:10:20.000 --> 00:10:22.720
Um do I think that's a possibility?
00:10:22.960 --> 00:10:26.720
I think so, maybe, but I don't know, you know.
00:10:26.960 --> 00:10:36.080
Um, so you know, people who who meet me nowadays are just like, oh, hey, what oh, you have a 20-year-old, uh, you're done.
00:10:36.240 --> 00:10:38.720
And I was like, I'm not done.
00:10:39.759 --> 00:10:41.279
What does that mean?
00:10:41.519 --> 00:10:42.639
You know what I mean?
00:10:43.039 --> 00:10:49.360
This fascinating, Susanna, to hear you talk because you and Michelle are almost sort of 10 years apart in your journey, right?
00:10:49.679 --> 00:10:50.000
Yes.
00:10:50.399 --> 00:10:57.200
Well, you're talking about the lack of resources that that were available for you uh when Arizona was diagnosed.
00:10:57.919 --> 00:11:02.240
Uh Michelle went through that, I guess, about 12 years earlier, 10, 12 years earlier.
00:11:03.759 --> 00:11:06.080
That's the whole point of this conversation, this podcast.
00:11:06.639 --> 00:11:06.879
Yes.
00:11:14.159 --> 00:11:15.120
So you wrote a book.
00:11:15.279 --> 00:11:23.759
Tell us the tell us sort of the motivation of the book, the process of the book, and and uh and how it's done, and and sort of what the overall goals are.
00:11:24.080 --> 00:11:31.519
Yeah, so I have two published works um now, and I had a dream the other night that I was working on my fourth.
00:11:31.759 --> 00:11:35.600
So I don't know what the third is gonna be or the fourth.
00:11:35.840 --> 00:11:38.799
Um, but just so you know, you heard it here first.
00:11:39.600 --> 00:11:40.960
Um the dream.
00:11:41.120 --> 00:11:46.480
You know how that one lady had a dream about Twilight and then made the movies, wrote the books and made the movies?
00:11:51.759 --> 00:11:52.559
Please.
00:11:52.960 --> 00:11:56.720
I'm like, I can I have a dream like that and make millions, please?
00:11:57.679 --> 00:12:01.759
Um so no, I've always been a writer.
00:12:01.919 --> 00:12:05.840
I've never I I started writing in a journal when I was 13 years old.
00:12:06.000 --> 00:12:10.240
I actually have every single journal I've ever written in since the age of 13.
00:12:10.320 --> 00:12:11.440
I am now 52.
00:12:11.600 --> 00:12:15.440
So um I'm on my 72nd journal.
00:12:15.759 --> 00:12:22.480
And to me, it has always been sort of like an instant, you know, therapeutic practice.
00:12:22.639 --> 00:12:24.559
Like just write it out, you know.
00:12:24.720 --> 00:12:29.440
I mean, obviously when I was 13, there weren't any computers, no smartphones, nothing like that, not even close.
00:12:29.600 --> 00:12:39.279
Like in college, we were kind of starting to dabble in email, but um, nowadays it's crazy if you see someone write, you know, pen to paper, if it's a young person, right?
00:12:39.519 --> 00:12:43.519
So, but either way, I I found it to be so therapeutic for me.
00:12:43.679 --> 00:12:50.799
It was how I was able to express myself, release my feelings, uh, feel heard and seen to myself.
00:12:51.039 --> 00:12:55.200
And um, and so I love the process of actually writing.
00:12:55.519 --> 00:12:59.039
And um I enjoy words.
00:12:59.200 --> 00:13:02.399
I was spelling bee champion in high school.
00:13:02.639 --> 00:13:07.360
I just, I really I just love everything about writing and reading in words.
00:13:07.679 --> 00:13:19.440
And um when I was going through a divorce, I started writing more about, you know, deeper feelings and you know what would I like to tell my younger self kind of thing.
00:13:19.679 --> 00:13:37.600
And I started off by writing an article and about, you know, how the unexpected motherhood that I was sort of thrust into, having a different kind of vision, um, different kind of motherhood than the vision that I had planned for.
00:13:38.000 --> 00:13:40.320
And, you know, and then I was like, you know what?
00:13:40.399 --> 00:13:42.000
I really want to tell my story.
00:13:42.159 --> 00:13:45.200
I want to share my story when I was going through this.
00:13:45.360 --> 00:13:49.039
There wasn't anyone else talking about it that I knew of.
00:13:49.279 --> 00:13:51.840
There, um, there certainly wasn't a guidebook.
00:13:52.000 --> 00:13:55.279
There wasn't a, you know, a roadmap or a blueprint.
00:13:55.360 --> 00:13:57.360
And I know that we have so many different stories.
00:13:57.440 --> 00:14:01.039
We come from so many different walks of life as disability parents.
00:14:01.279 --> 00:14:07.840
However, I just felt like if I can just help, you know, a few people, you know, feel less alone.
00:14:08.080 --> 00:14:15.039
So I started off writing and just dumping everything into this huge, you know, it was like 350 pages.
00:14:15.360 --> 00:14:20.480
And then I for me, that was, it was actually very necessary because I had to get it all out.
00:14:20.879 --> 00:14:32.000
And um, and then once I did that, I started working with a writing coach who was like, okay, so let's talk about, you know, what it's like writing for an audience as opposed to just releasing.
00:14:32.399 --> 00:14:34.000
And that was a process.
00:14:34.080 --> 00:14:49.440
And I will tell you, it took me 10 years to get this thing published because I would start writing and then I would like be in my office and start listening to like a cold play song or something and get so emotional and start crying, and then I would put it away for six months.
00:14:50.159 --> 00:14:53.440
And then, you know, I'd listen to something else and start sobbing.
00:14:53.519 --> 00:14:56.480
And I, it just was a very emotional write.
00:14:56.799 --> 00:15:02.879
Um, but it is, you know, it's a memoir of me raising my daughter, Arizona.
00:15:03.360 --> 00:15:11.039
And and then what I also included at the end of each chapter was sort of like a truth corner, like, okay, here's what I really feel.
00:15:11.200 --> 00:15:19.440
And then, you know, sort of like hints and tips for every stage of motherhood that I write about in the book.
00:15:19.600 --> 00:15:25.120
And then as I'm writing, writing, writing, Arizona's getting older, and she's like, You're writing a book about me.
00:15:25.200 --> 00:15:27.840
And I was like, Well, it's my story.
00:15:28.080 --> 00:15:29.519
You're in it, you know.
00:15:29.600 --> 00:15:31.519
And she was like, No, thanks.
00:15:31.679 --> 00:15:32.559
You know what I mean?
00:15:32.720 --> 00:15:41.679
And I was like, So we had to talk about, you know, because I need to take her, you know, her thoughts and feelings into consideration.
00:15:42.159 --> 00:15:51.919
Um, and so we had to go through that whole process and we came up with a compromise ultimately and eventually, which is she wouldn't allow her name to be in the book.
00:15:52.240 --> 00:15:56.080
So she's uh just called the letter A in the book.
00:15:56.399 --> 00:16:00.879
And the other compromise is that she was going to write the foreword.
00:16:01.120 --> 00:16:08.960
And by write the foreword, I mean she had a conversation with my writing coach, who then put those into words, right?
00:16:09.600 --> 00:16:11.840
And so one of the things it's amazing.
00:16:11.919 --> 00:16:20.159
And so one of the things that she said basically was like, this is what I want readers to know before they read this story that is about to be told by my mother.
00:16:20.320 --> 00:16:28.399
Wow, and one of the things one of the things that she said in that forward is, you know, um, yeah, this is it.
00:16:28.559 --> 00:16:32.240
My daughter A had some advice she wanted to share with readers of this book.
00:16:32.399 --> 00:16:33.840
Here are a few of her thoughts.
00:16:34.000 --> 00:16:38.399
And so one of those thoughts was your true self is enough.
00:16:38.559 --> 00:16:41.679
Um, you shouldn't have to change yourself to make other people happy.
00:16:41.840 --> 00:16:52.639
And so, and therefore, the title of my book is Your True Self is Enough, Lessons Learned on My Journey Parenting a Child with Autism.
00:16:53.279 --> 00:17:01.919
And um, you know, it's it's been well received, you know, it's not a deep, you know, heady read.
00:17:02.080 --> 00:17:11.200
It's you know, 112 whatever pages of like by the way, I know my audience, like who has time to read 500 pages, right?
00:17:11.599 --> 00:17:14.799
Um, you're in the midst of caregiving and right.
00:17:14.960 --> 00:17:18.559
Um and and then uh just this.
00:17:18.720 --> 00:17:21.359
So anyway, so I published that on my 50th birthday.
00:17:21.519 --> 00:17:23.759
I wanted to have like sort of this milestone.
00:17:25.039 --> 00:17:29.279
Yeah, it was really, I feel so proud of myself.
00:17:29.440 --> 00:17:47.279
Um, and then the second book, I'm I'm in an anthology called Suddenly Brave Together, and it's 30 letters to caregiving moms, basically from those of us who have uh children 18 years and older, written to that mom who's just received a diagnosis, you know.
00:17:47.519 --> 00:17:48.079
Oh, that's good.
00:17:48.559 --> 00:17:48.960
Yeah.
00:17:49.119 --> 00:17:51.599
And so I'm chapter 23 in that one.
00:17:51.839 --> 00:18:06.799
But um yeah, I just again, uh any way that I can help support my beloved community that I had no idea I was going to be a part of, I just feel so honored to do so.
00:18:06.960 --> 00:18:10.880
I I mean, it's like again, like we come from all different walks of life.
00:18:10.960 --> 00:18:12.480
Like you're in Texas, right?
00:18:12.559 --> 00:18:14.000
You're in New York, right?
00:18:14.160 --> 00:18:18.720
We and you know, we our kids might have you know different diagnosis.
00:18:18.880 --> 00:18:20.559
I happen to be a single mother.
00:18:20.720 --> 00:18:29.359
There's a mom who has an amazing, you know, partner who is so involved, and they have six other children, you know, it's again.
00:18:29.599 --> 00:18:32.799
Um, I have two cats, right?
00:18:33.200 --> 00:18:36.319
Um so Luna and Phoebe.
00:18:36.880 --> 00:18:44.720
And um well, I think that's that's part of that's part of I think what me encourage so the whole family encouraged Michelle to write a book.
00:18:44.960 --> 00:18:48.079
And and writing a book is intimidating, right?
00:18:48.160 --> 00:18:55.440
Because like you said, you have to start with everything and then we'll lit down, and it takes a process, and so we're uh we're not known for our patients in this family.
00:18:55.519 --> 00:18:58.880
So then we need to context, right?
00:18:58.960 --> 00:19:02.319
So here it's this, it's a more free form, we can kind of get right to it.
00:19:02.400 --> 00:19:05.519
Um she and Gregory have such an amazing story.
00:19:05.599 --> 00:19:08.880
But there's there's a lot of context to having a special needs child.
00:19:08.960 --> 00:19:10.480
And I and I'm just kind of learning, right?
00:19:10.559 --> 00:19:13.839
So Michelle's on the front line, and of course, we all know Gregory.
00:19:14.079 --> 00:19:19.279
Well, all of our relationships are very different, and our responsibilities are nothing compared to what we should do.
00:19:19.839 --> 00:19:26.880
But but I think that at some point, you know, we we often dodge topics because we cry what we can't, you know, right?
00:19:27.119 --> 00:19:31.839
But but there's there's especially as child, there's all the responsibility being that child care.
00:19:32.720 --> 00:19:35.759
But as we all know, right, you have a lot of different roles, right?
00:19:35.920 --> 00:19:48.240
So you have the role you have in your business and providing, and you have the role that you have as a spouse, and you have the role that you have as compared to another child that's not special nature, maybe multiple special age children.
00:19:48.480 --> 00:20:00.000
So I think that that that that parental role it would be fascinating to hear you guys talk about the what in what in social work they talk about as the self-care piece of this thing.
00:20:00.240 --> 00:20:09.039
Yeah, because in in uh we've been super fortunate um to be able to support a school social work and get through our business.
00:20:09.759 --> 00:20:17.599
And what we learned at sort of early stage was that the the social work get involved in such traumatic situations, right?
00:20:18.079 --> 00:20:25.839
Yes, yes, that they learn quickly that they're not taken care of and they're not able to take care of other people.
00:20:25.920 --> 00:20:31.440
So that's what I think the way they dumbed it down for me was you like on the airplane, you gotta put the back to it yourself first before you start.
00:20:31.920 --> 00:20:32.319
That's right.
00:20:33.519 --> 00:20:39.039
So how so maybe tell me both of you think about how do you take care of yourself through this whole process?
00:20:39.519 --> 00:20:40.720
Like, where do you find time?
00:20:40.799 --> 00:20:41.680
How do you find time?
00:20:41.759 --> 00:20:42.559
Where do you find time?
00:20:42.960 --> 00:20:45.440
You're just so low on the totem pole.
00:20:45.680 --> 00:20:47.759
I think it just if it happens, it happens.
00:20:47.839 --> 00:20:49.200
I I'm the worst about that.
00:20:49.359 --> 00:20:54.960
Um and you know, I was listening to her podcast today about what if you had to have surgery.
00:20:55.119 --> 00:20:58.240
I've have had just had a surgery, another surgery Friday.
00:20:58.319 --> 00:21:06.079
I've had three surgeries on my foot in the last three years, and it is very, very high anxiety about who's gonna be here for me.
00:21:06.240 --> 00:21:06.720
That's right.
00:21:06.960 --> 00:21:17.599
So thank goodness I have four siblings and one that lives within driving distance, and she gives up holidays, you know, takes time off to come and take care of me.
00:21:17.759 --> 00:21:23.759
And we were just talking about, I mean, the way y'all were talking about what if something major happens, which it does happen in families.
00:21:24.000 --> 00:21:25.359
What who's gonna step in?
00:21:25.519 --> 00:21:26.319
Who's gonna do that?
00:21:26.480 --> 00:21:28.559
And I'm a widow, so it's just me.
00:21:28.720 --> 00:21:32.000
Yeah, so a lot of it falls on my younger son.
00:21:32.079 --> 00:21:37.680
I have an amazing son that's um two years younger than Gregory, and he just steps up to the plate.
00:21:37.839 --> 00:21:38.799
I mean, he totally does.
00:21:38.880 --> 00:21:40.400
He just, Mom, where do I need to be?
00:21:40.480 --> 00:21:41.119
What do I need to do?
00:21:41.200 --> 00:21:42.319
But he's local.
00:21:42.720 --> 00:21:46.960
So um, I have a new replacement coming up in December and it's on his calendar.
00:21:47.039 --> 00:21:48.640
I'm like, you can't go hunting.
00:21:48.799 --> 00:21:55.759
You can't I at least need you for the day of surgery, and we'll see how the week goes.
00:21:55.839 --> 00:21:56.960
And he goes, I'll be here, mom.
00:21:57.200 --> 00:21:59.759
So he's got it, you know, wrapped up on his calendar, but it is.
00:22:00.319 --> 00:22:03.759
It's it's one of those things where you're I don't really worry about myself.
00:22:03.839 --> 00:22:06.400
I worry way more about Gregory than I do myself.
00:22:06.720 --> 00:22:07.359
I really do.
00:22:07.759 --> 00:22:09.680
But I think it's normal, don't you?
00:22:12.480 --> 00:22:20.799
I mean 1000%, but I'm just it's so interesting because we were just Sean was just talking about self-care, also, right?
00:22:20.960 --> 00:22:24.400
And here we are talking about surgery, right?
00:22:24.559 --> 00:22:27.359
And surgery, that's a necessity for you.
00:22:27.519 --> 00:22:30.559
That's a basic human human need for you.
00:22:30.640 --> 00:22:35.119
You have a medical issue and it needs to be fixed with surgery.
00:22:35.440 --> 00:22:39.839
So, so imagine we're having this anxiety about surgery.
00:22:40.480 --> 00:22:45.119
We're having this anxiety about I have anxiety sometimes about even just taking a shower.
00:22:45.200 --> 00:22:45.839
You know what I mean?
00:22:45.920 --> 00:22:47.359
And that is also a basic humanity.
00:22:47.519 --> 00:22:49.599
That is not self-care, right?
00:22:50.000 --> 00:22:59.200
So, so if we're having all of this anxiety and worry, um, how then do we just leap into see ya?
00:22:59.279 --> 00:23:03.039
I'm going to Turks and Caicos or whatever, whatever self-care is for you.
00:23:03.200 --> 00:23:07.920
I mean, that might not be self-care for for for someone, but it certainly would for me.
00:23:08.000 --> 00:23:09.200
I will tell you that.
00:23:09.440 --> 00:23:13.920
Um, I got to go on a trip because of my son, my younger son.
00:23:14.000 --> 00:23:15.200
That's how I got to go.
00:23:15.519 --> 00:23:16.400
Yeah, exactly.
00:23:16.559 --> 00:23:26.000
And we're so, aren't we so it take first of all, takes a couple of days to decompress and even realizing that nobody needs you in that moment.
00:23:26.640 --> 00:23:31.599
Um, and then you feel guilty sometimes, most of the time.
00:23:31.839 --> 00:23:47.839
And then you, you know, come back kind of like, and also it requires so much effort to plan for every minute of you being gone so that your adult child is taken care of every single need, you know?
00:23:48.079 --> 00:23:48.559
Absolutely.
00:23:48.799 --> 00:24:05.759
Um, so so self-care for me, I have, I have been able to really lean into just being so present in each moment and asking myself every single day, what does self-care look like for me today?
00:24:05.920 --> 00:24:12.319
Like, what does like real sort of taking care of my soul look like for me today?
00:24:12.559 --> 00:24:15.440
Um, how can I find little bits of joy?
00:24:15.680 --> 00:24:19.359
I just had a delicious Diet Coke right before I got on this podcast.
00:24:19.519 --> 00:24:23.839
To me, that was a quick, I don't drink coffee, but like like that's a quick little pick me up.
00:24:23.920 --> 00:24:25.039
It's fun, you know?
00:24:25.200 --> 00:24:28.559
And it's I just knew that I would be in a good mood.
00:24:28.640 --> 00:24:35.839
Well, I knew I was gonna be in a good mood with you too anyway, but just that extra little kick of a Diet Coke.
00:24:36.079 --> 00:24:52.160
And um, I have funding for cheating a little bit because I I saw a little bit of the podcast, and there was this question of feeling guilty of it's should I feel guilty that I want to have that I want to maybe want to be an indie nester and maybe I won't be an indie nestor.
00:24:52.319 --> 00:24:57.119
Should I feel guilty that I'm a little bit jealous of someone else's life because they're gonna be anesther?
00:24:57.279 --> 00:25:05.839
But but I guess I guess I don't really know how to how to ask the question, but at some point, if you're if you're not selfish, it all blows up.
00:25:05.920 --> 00:25:20.960
Like I can say in the in a work context, in a work context, I deal with this fairly frequently where you have a wonderful, wonderful contributor that you see working themselves to a point that they're gonna they're gonna become exhausted and end up quitting.
00:25:21.440 --> 00:25:27.200
And I have to sit them down and say, like, we appreciate it, but we need you here for 10 years, not for 10 months.
00:25:27.519 --> 00:25:31.599
And I've seen this pace, we've already done this pace, and we know it's not sustainable.
00:25:32.000 --> 00:25:38.480
So so like what advice would you have for those young moms to like to be a little, I mean, is it is it be a little selfish?
00:25:38.720 --> 00:25:41.039
Because this is a long-term project, right?
00:25:41.119 --> 00:25:44.799
This isn't this isn't something that's gonna get better tomorrow, right?
00:25:45.039 --> 00:25:47.119
Yeah, they're not gonna go off to college at 18.
00:25:47.279 --> 00:25:47.599
Right.
00:25:48.000 --> 00:25:50.720
No, not well, not in my case, not in your case, right?
00:25:50.960 --> 00:25:51.680
Yeah, right.
00:25:52.480 --> 00:25:53.440
How do you manage that?
00:25:53.519 --> 00:26:06.880
How do you how do you get yourself in a place to where you're where you're you're still able to have the fun you should have and have the and have the yeah the time for yourself that you need while you have such a huge responsibility?
00:26:07.279 --> 00:26:07.839
I don't know.
00:26:08.079 --> 00:26:11.839
Don't until the yeah, I mean if we if that's the wrong answer.
00:26:12.000 --> 00:26:15.680
So we should surgery with another guess for both.
00:26:16.720 --> 00:26:18.000
I have low blood pressure.
00:26:18.160 --> 00:26:20.240
Um I I had high blood pressure going in.
00:26:20.319 --> 00:26:23.680
They looked at me and I was worried about, you know, I'm just worried about what's going on.
00:26:23.759 --> 00:26:24.640
Where where is he?
00:26:24.799 --> 00:26:25.599
You know, I don't know.
00:26:25.680 --> 00:26:26.240
I can't answer.
00:26:28.400 --> 00:26:37.599
I I think that I think that we have to first acknowledge that um that it is not guilty to put ourselves first.
00:26:37.759 --> 00:26:42.000
Let's just talk about that tiny little piece, which is not a tiny piece, it's a big piece.
00:26:42.240 --> 00:26:49.519
And then to lean into um who we are as as these long-term caregivers, right?
00:26:49.599 --> 00:26:53.039
And and with caregiver burnout, you know, on repeat.
00:26:53.200 --> 00:27:08.240
Um it to have so much compassion for ourselves, I think for me, has been the key to getting over that little hurdle of not feeling so guilty and not feeling like my joy and happiness does not matter.
00:27:08.559 --> 00:27:11.359
I I feel like it matters so much.
00:27:11.519 --> 00:27:18.880
I actually still have the ability tremendously, tremendously how effective you're gonna be as a caregiver.
00:27:19.759 --> 00:27:23.599
Yes, yes, yes, yes, yes, yes, and a human being.
00:27:23.759 --> 00:27:30.960
And um, but I I I I have found it to be almost non-negotiable now um in my days.
00:27:31.039 --> 00:27:36.880
And some days I can't access it when there's like a there's an emergency happening where I have to be so physically present, right?
00:27:36.960 --> 00:27:41.200
My daughter's having an accident or issue or something, right?
00:27:41.440 --> 00:27:45.920
I have to be so present, I I have to forego my needs in that moment.
00:27:46.480 --> 00:27:51.039
And there are ways to just integrate into our own lives.
00:27:51.119 --> 00:27:54.160
Like, I have to cut out 30 minutes of my time.
00:27:54.480 --> 00:28:02.079
I cannot take that call from my friend who's so amazing that I know is just gonna talk about her neurotypical teenagers the whole time.
00:28:02.319 --> 00:28:03.039
Whatever it is.
00:28:03.119 --> 00:28:04.960
I mean, fill in the blank, right?
00:28:05.039 --> 00:28:10.240
Like I I I just made the decision that my family's in Ohio, right?
00:28:10.319 --> 00:28:14.400
And I have come from a big I have four siblings too, and I love my family.
00:28:14.480 --> 00:28:15.839
Everyone lives so far away.
00:28:15.920 --> 00:28:19.039
I'm so sad that we don't live closer.
00:28:19.279 --> 00:28:21.759
Um, and they all have tons of kiddos.
00:28:22.079 --> 00:28:34.319
And I just made the decision that I cannot go to Ohio for Thanksgiving because my daughter's schedule only allows her to take Thursday and Friday off that week as opposed to before when she was in her high school program.
00:28:34.480 --> 00:28:36.079
It was she had the entire week off.
00:28:36.160 --> 00:28:38.480
So then we could come on a Tuesday, it's not so crowded.
00:28:38.720 --> 00:28:48.799
It is not going to be self-care for me to traipse across the country during Thanksgiving week with my daughter, even as much as I want to see my family.
00:28:48.880 --> 00:28:53.119
So I had to make that decision to say, no, I can't do that, right?
00:28:53.279 --> 00:29:00.400
But that is going to be so supportive for me in the long run because I'm not going to be frazzled and fried.
00:29:00.480 --> 00:29:04.000
I will see my family in December and then we can stay for longer.
00:29:04.079 --> 00:29:11.359
And then it's not going to be I I'm just saying, like I have to check in with myself at every single turn.
00:29:11.519 --> 00:29:13.039
Does this work for me?
00:29:13.440 --> 00:29:13.839
Yes.
00:29:14.000 --> 00:29:15.519
Does it not work for me?
00:29:15.759 --> 00:29:16.079
No.
00:29:16.480 --> 00:29:20.640
Um, and you know, I've been able to build a little team of helpers.
00:29:20.799 --> 00:29:24.240
I've been able to get funding for said helpers, right?
00:29:24.640 --> 00:29:28.079
Um absolutely home.
00:29:28.720 --> 00:29:30.000
Yes, Sean.
00:29:30.559 --> 00:29:34.720
And even out in the community, like community living support.
00:29:34.880 --> 00:29:42.799
Let's go, you know, I have helpers who will come and take Arizona and they'll go to the mall and they can talk, they work on social skills, anyhow.
00:29:42.960 --> 00:29:43.279
Yes.
00:29:43.839 --> 00:29:44.799
No, but this is important.
00:29:45.279 --> 00:29:55.119
This is this is where we get into like those little factories that I find fascinating because you guys probably had to find them on your own, and maybe we could provide that you guys can provide a shortcut with someone.
00:29:55.200 --> 00:29:58.640
So maybe just if you don't mind, like what's the technical process?
00:29:58.720 --> 00:30:01.359
Is this different in California than it would be in Texas?
00:30:01.680 --> 00:30:05.519
Well, I'll tell you how, yeah, that's that's an excellent question.
00:30:05.599 --> 00:30:08.400
And by the way, it was not an easy feat.
00:30:08.559 --> 00:30:23.279
It it required a lot of tenacity and advocacy and being a squeaky wheel, which by the way, I know not everybody wants feels comfortable doing that, but I was so desperate for support that could help me.
00:30:24.319 --> 00:30:27.519
Um, that could also be supportive for Arizona.
00:30:27.680 --> 00:30:30.720
But I was the first one in my train of thought.
00:30:30.880 --> 00:30:33.920
Like, how can I just have a little respite?
00:30:34.400 --> 00:30:34.799
You know?
00:30:35.359 --> 00:30:38.720
Um, and so we have regional centers here in California.
00:30:38.880 --> 00:30:45.279
Arizona has been a client of the West Side Regional Center since she was two and a half when she was first diagnosed with autism.
00:30:45.519 --> 00:30:54.720
There are vendors and support um modalities that help her get, you know, the therapy she needs, social skills groups, things like that.
00:30:54.960 --> 00:31:01.440
A few years ago, I moved into what is called self-determination program, SDP.
00:31:02.079 --> 00:31:08.559
And so I don't know what other states have SDP, but let's talk about this for a second.
00:31:08.720 --> 00:31:25.039
So basically, all of the funding that Arizona was able to get through the regional center, because I was having a hard time finding vendors that were perfect for her, because like the social skills groups were always like all boys and she wanted to be with girls, you know, understandably.
00:31:25.279 --> 00:31:36.000
So and um, and so self-determination allows me to take the dollars that used to fund all of the the other services vendored through the regional center.
00:31:36.079 --> 00:31:40.400
And now I can find my own vendors for community living support.
00:31:40.480 --> 00:31:46.640
I can find employees, um, you know, 25 bucks an hour,$30 an hour, whatever it is.
00:31:46.799 --> 00:31:53.039
There are college students who have siblings on the spectrum who are or who have disabilities.
00:31:53.200 --> 00:31:57.519
And I will, it's like I have that spidey sense.
00:31:57.599 --> 00:31:59.839
Like I will meet them out in the wild.
00:32:00.000 --> 00:32:03.279
And then they have to go through this whole vetting process of working.
00:32:03.440 --> 00:32:07.279
There's one uh uh college student who works with us.
00:32:07.440 --> 00:32:16.799
Her brother in Arizona were on the same um uh special needs soccer league team for for years, and she would always come to the matches.
00:32:16.880 --> 00:32:20.720
And I was like, and once I got this funding, I was like, excuse me.
00:32:21.359 --> 00:32:27.440
Hello, you know, and it is it's like I don't even have to train her.
00:32:27.759 --> 00:32:33.119
She knows so much her patience, her understanding, like so.
00:32:33.359 --> 00:32:36.400
I um she came the other day and I went out to dinner.
00:32:36.640 --> 00:32:38.319
Hello, you know.
00:32:39.039 --> 00:32:55.440
Um, I I I mean, I, you know, and then when Arizona's in various school programs, um, then I can, you know, either do my work as I need to do my work, or I will schedule, you know, I'll go run around on a tennis court and whack a ball, you know.
00:32:56.000 --> 00:32:58.000
That is very not pickleball.
00:32:58.319 --> 00:32:58.960
Tennis.
00:32:59.839 --> 00:33:00.799
Real pickleball.
00:33:01.359 --> 00:33:16.079
I'm just saying, finding the thing, and then I can get to be with all these other ladies who love to play tennis, and my life feels so much different than theirs most of the time, because you know, I am not a lady who lunches.
00:33:16.160 --> 00:33:21.279
However, every once in a while I can be a lady who lunches one day, you know?
00:33:22.880 --> 00:33:24.319
So I feel normal, Sean.
00:33:24.960 --> 00:33:27.119
The self-determination, yeah.
00:33:27.359 --> 00:33:29.920
STP self-determination program.
00:33:30.240 --> 00:33:31.200
And let's, you know what?
00:33:31.279 --> 00:33:33.839
Let's a national thing or is that just a California?
00:33:34.640 --> 00:33:36.079
I'll have to Google it and find out.
00:33:36.319 --> 00:33:42.319
You're putting me on the spot, but I let's brainstorm, let's research this together because it has been life-changing.
00:33:42.480 --> 00:33:44.640
It has been life-changing for me.
00:33:45.119 --> 00:33:46.960
Um I've never heard of it.
00:33:47.039 --> 00:33:47.599
That's amazing.
00:33:47.839 --> 00:33:48.400
That's amazing.
00:33:48.480 --> 00:33:57.440
I live in a really small town, and um, I moved from a fairly larger town, but the support I had were the kids that he went to school with.
00:33:57.519 --> 00:34:03.680
They'd pick him up, take him to the movie, or take him somewhere, even as a senior and um or through high school.
00:34:03.759 --> 00:34:04.640
And I really missed that.
00:34:04.799 --> 00:34:06.720
It was it was just so good for him.
00:34:06.880 --> 00:34:11.920
It was just doing the normal thing, you know, it was it was a lot of fun.
00:34:12.079 --> 00:34:20.159
And I can trust them because they were usually the ones in school that were with him, you know, not with him, but you know, new him and were part of the the programs at school.
00:34:20.239 --> 00:34:21.119
So it was kind of cool.
00:34:21.360 --> 00:34:23.760
And does that help like if you do want to take a vacation?
00:34:23.840 --> 00:34:27.599
I I I've seen these these businesses advertised as respite care.
00:34:28.320 --> 00:34:31.679
So they're they're for people with all spectrums of needs.
00:34:31.920 --> 00:34:40.159
But the whole idea, I love the idea because the idea is that we'll take care of your loved ones so that you can you can go and actually get a break and take a breather.
00:34:41.039 --> 00:34:44.239
So you ever did you guys have your have you ever looked into those services?
00:34:44.880 --> 00:34:48.960
It's kind of yeah, it's kind of like the same thing.
00:34:49.119 --> 00:34:51.599
I just have multiple staff folks.
00:34:51.760 --> 00:35:00.639
I mean, when if I do go on vacation, well, I will also say my daughter has a father as well, um, who is in the picture for sure.
00:35:00.800 --> 00:35:03.679
He's very generous and kind and loving.
00:35:03.920 --> 00:35:05.840
She just lives with me full time.
00:35:06.159 --> 00:35:10.800
So um I can, you know, schedule sometimes.
00:35:10.880 --> 00:35:12.559
He's very busy and he travels a lot.
00:35:12.639 --> 00:35:20.320
So I have to organize and schedule um for support if I'm out of town for a couple of days.
00:35:20.480 --> 00:35:25.760
But typically I have, you know, girlfriends who will take turns that she's known since she was born.
00:35:25.920 --> 00:35:26.639
You know what I mean?
00:35:26.800 --> 00:35:30.719
And you know, her food stuff is still a big thing because of all her allergies.
00:35:30.880 --> 00:35:43.039
So I'm I'm cooking ahead of time and putting together all these little Tupperwares of her her meals so that it's easier for the so building that building that local network.
00:35:43.599 --> 00:35:48.480
Yes, building um my my tribe, seriously.
00:35:49.519 --> 00:35:53.760
And I think Tom, that's where it kind of was hard because we moved here when he was a senior.
00:35:53.920 --> 00:36:01.679
So that tribe I had was in Colorado, and that was the tribe that knew him from gosh, before he even spoke, right?
00:36:02.480 --> 00:36:05.840
Those are the big, those are like the the really big, big decisions that people make.
00:36:06.000 --> 00:36:12.480
I mean, so like moving away from that infrastructure is a huge and that's where you meet, right?
00:36:12.559 --> 00:36:17.679
You meet your kids, you meet your friends or your kids' parents, or your kids' friends' parents, right?
00:36:18.000 --> 00:36:18.880
Yeah, I knew exactly what you're doing.
00:36:19.920 --> 00:36:20.880
Exactly, exactly.
00:36:21.119 --> 00:36:29.119
And you feel comfortable leaving them at their like Jane, you know, uh my best friend and I moved away from each other, and it was nothing for us to leave our kids with each other.
00:36:29.199 --> 00:36:33.440
And Gregory was right in there with them because they knew him since he was, you know, a baby.
00:36:33.679 --> 00:36:40.400
And when you lose that tribe, it's I feel like I've isolated it's because we are kind of out here by ourselves, but we we do fine.
00:36:40.800 --> 00:36:41.679
We do all right.
00:36:42.159 --> 00:36:56.079
Yeah, um I feel like we can't give people enough, or you guys can't give people enough information, and I think um I would say sort of permission to go put themselves first more.
00:36:56.320 --> 00:36:59.039
Yes, seems like that's it seems like that's the black hole.
00:36:59.199 --> 00:37:00.960
Yes, the black hole you get into.
00:37:01.119 --> 00:37:07.920
It is well, I know because at our age, Sean, even though you're younger than me, she's way younger than us, people are retiring.
00:37:08.079 --> 00:37:09.199
People are retiring now.
00:37:09.280 --> 00:37:10.000
What are they doing?
00:37:10.079 --> 00:37:11.519
They're traveling all the time.
00:37:11.679 --> 00:37:18.320
They just pick up, they just pick up and go, and you're just like and I do, I pick up and go, but I take Gregory with me.
00:37:18.480 --> 00:37:29.679
We do travel together, so that's well, you're I mean, all the work you did, and I think that that I always think about the young, like I said, the young parents who just got the diagnosis and they're like, what the heck?
00:37:30.000 --> 00:37:30.960
Yes, that's right.
00:37:32.960 --> 00:37:40.400
Like that, hey, you might not be super outgoing, you might not used to be being that sort of tiger mom personality, right?
00:37:41.199 --> 00:37:49.760
And you might not sort of think about in advance of like of the of the infrastructure you need when they're 15, 18, 20, 25.
00:37:52.880 --> 00:37:57.360
Do what you do have to get a little mean, a little aggressive sometimes, don't you, Susannah?
00:37:57.440 --> 00:37:59.920
You you have to to be the advocate for them.
00:38:00.000 --> 00:38:00.559
You really do.
00:38:00.800 --> 00:38:05.920
Yeah, and I always, I mean, I try to do it with a smile, but I'm I'm not playing around.
00:38:06.079 --> 00:38:09.440
Like, please, you know, help.
00:38:10.159 --> 00:38:10.559
Yeah.
00:38:11.039 --> 00:38:11.199
Right.
00:38:12.159 --> 00:38:16.239
But I think also the second part of that is is in that long-range planning thing.
00:38:16.320 --> 00:38:19.039
And I know not having that myself.
00:38:21.920 --> 00:38:27.280
But I we've just watched the work that Michelle's done to make Gregory as independent as he can be.
00:38:28.320 --> 00:38:34.079
And and I think that independence means that um that you know I took him on a mission trip.
00:38:34.400 --> 00:38:46.800
And so all of a sudden, him being with me for two or three or four days was possible because of all of the listing out those life skills that you have to work on every day.
00:38:46.960 --> 00:38:53.280
Like that's a little bit of the goal at the end is everyone gets to have a little bit more of an independent life.
00:38:53.519 --> 00:38:55.840
All that work is done early, early on.
00:38:56.159 --> 00:39:07.920
And in that plan of like, what's gonna help this person, this special needs person, become as independent as they're not always gonna reach the same level independent, but to make sure that they maximize it.
00:39:08.320 --> 00:39:09.280
Yeah, definitely.
00:39:10.880 --> 00:39:13.360
That that was that's our goal.
00:39:13.679 --> 00:39:16.639
That was really beautiful what you said, Sean.
00:39:17.679 --> 00:39:23.360
Yeah, and while we were talking, I print chat you told me that there's a there's a service.
00:39:24.960 --> 00:39:32.639
Applied selfdirection.com that has gone through and the names and the details of each state's version.
00:39:32.960 --> 00:39:35.039
Hey now, there you go.
00:39:35.280 --> 00:39:45.599
Applied what applied selfdirection.com seems to be the resource that you would go to in any, and they will tell you about your state's version of the self-direction program.
00:39:46.400 --> 00:39:46.960
There you go.
00:39:47.199 --> 00:39:51.599
Okay for help for you and that's good to know.
00:39:52.159 --> 00:39:52.719
Love it.
00:39:53.920 --> 00:39:55.519
Good to know for both of our podcasts.
00:39:56.159 --> 00:39:57.199
It's very nice to be you.
00:39:57.280 --> 00:39:58.320
I will definitely read you books.
00:39:59.360 --> 00:40:00.559
Yes, definitely.
00:40:00.960 --> 00:40:02.719
So good now.
00:40:02.880 --> 00:40:04.400
Remember, three comes before four.
00:40:04.480 --> 00:40:06.639
Now you dreamed about book number four.
00:40:06.880 --> 00:40:08.639
I know three.
00:40:08.960 --> 00:40:11.360
Okay, gotta get gotta get on it.
00:40:12.159 --> 00:40:14.559
Maybe number three is about how to take care of the mom.
00:40:17.519 --> 00:40:21.920
In process, work in progress, but yes, totally, yeah, totally, absolutely.
00:40:22.079 --> 00:40:23.360
So thank you so much.
00:40:24.320 --> 00:40:25.199
Thank you both.
00:40:25.440 --> 00:40:26.719
Thank you both so much.
00:40:27.599 --> 00:40:29.039
Thank you for doing the help people.
00:40:29.760 --> 00:40:31.280
All right, okay, take care.
