Moms Raising The Spectrum

S1 Episode 21 - Sabrina Kearney: Part One

• Amy and MJ • Season 1 • Episode 21

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**MOM & DAUGHTER: NAVIGATING AUTISM TOGETHER**
Part One of our episode with Sabrina Kearney 
Sabrina is a brilliant woman working in the aerospace industry and a former Arizona pageant title holder who shares her powerful story of motherhood, autism, and self-discovery.
In this episode, Sabrina opens up about receiving her diagnosis and how it helped her better understand both herself and her daughter, EJ. She also shares EJ’s autism journey from childhood into the teenage years and the lessons they’ve learned along the way.
This conversation is honest, inspiring, and filled with insight for parents and families navigating similar experiences. 💙🧩

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SPEAKER_00

Hey everyone, welcome back to Moms Raising the Spectrum. We are so grateful you're here with us for another meaningful conversation. Today's episode is especially unique because we're talking with a mom who's not only raising a daughter on the spectrum, but is also on the spectrum herself. We're excited to hear her perspective both as a mother and through her own lived experiences.

SPEAKER_02

Please help us welcome Sabrina to our podcast. Sabrina, thank you so much for joining us. I'm so happy to see your beautiful face again. Let's just jump right in. Introduce yourself.

SPEAKER_01

Okay, hi, I am uh Sabrina Kearney. Uh just got married recently. I need to finish updating my email and name eventually.

SPEAKER_02

There's so much to do when you get married and changing everything, right?

SPEAKER_01

But yeah, so basically I'm a um I work as assistant engineer for a small aerospace company. We have a daughter who just recently turned 13. Um, have a great husband um who just recently retired from the post office after 30 years of service.

SPEAKER_02

Congratulations to him.

SPEAKER_01

Um we live um in Litchfield Park. And I've done various extracurriculars over time, such as pageantry, which is how you and I met, um, but also play sports in call in high school and college and like to travel. Um, don't have as much time to with uh deal with family and work, but when we get a chance to, we sneak away for a little bit.

SPEAKER_02

Like to travel outside of work too, right? Not just for work.

SPEAKER_01

Thank you for clarifying. Yes, I travel a lot. I travel a lot for work, but I also like traveling outside of work way better. So yeah. And that's pretty much me and a nutshell.

SPEAKER_02

Yay! Well, we are so happy to have you here with us. Uh so tell us a little bit more about your work. So, what what do you do again?

SPEAKER_01

So I'm a systems engineer at an aerospace company, but my my scope basically includes doing uh system safety and regulatory paperwork. I also help coordinate logistics for launch campaigns as well.

SPEAKER_02

Dang, girl. I knew I was like, I knew you'd you do something just that blows my mind. How did you get into that?

SPEAKER_01

Like did you actually by by accident? But I actually, but for when I first went to school, um kind of struggled a little bit in high school um because of my undiagnosed autism. Um, so when I finished, like going forward in school was not really like a big thing for me. But my mom was basically like, yeah, so either you're gonna get a you're gonna go to a four-year college or a two-year college, just like working and and that's all was was an option. So when I went to school, college the first time, I thought about like what do I what did I like about high school? And I really liked foreign languages and I liked some of the science classes. So I was like, I'll study that and I'll become a teacher. And so I went through all of that for the four years and did my student teaching, but then realized I don't like teaching students. Wow, that's shallow. And it's really challenging work. Not for everybody, right? It's definitely not for anybody, everybody. And I um it would I didn't have the patience for it. And I'm like, I can't have this be the rest of my life. And so from there, um, I kind of I minored in recreation and tourism. So I ended up getting a job with the Park Service uh locally there in Virginia for a bit. Um and then I'm just gonna Virginia. I'm originally from Hampton, Virginia. It's a suburb that's close to Virginia Beach. Oh, nice. Okay, yeah. And so I worked for the park service out there for a bit. And then I ended up moving to New Jersey because my aunt, um, the one that was on stage when I got crowned, that aunt, she um, her husband had recently passed and she needed help taking care of her son. So I moved in with them. And I would take computer classes at the community college part-time just for fun. And I was like, oh, I kind of like this computer thing, maybe I'll get into that. Um, and so I went back to school full-time for it. I got an internship at NASA Goddard in Maryland. And then from there, I just took off and I ended up getting a full-time position with an aerospace company and just kind of worked my way up. And now it's almost 20 years later.

SPEAKER_02

And this is what I'm doing. Wow, girl, that's amazing. You enjoy it a lot.

SPEAKER_01

Oh, I love it, honestly. And I'm kind of sometimes I kick myself in the butt. Like, I feel like I I wish I would have had like more direction younger on as to like what because it's all about, especially I think when you're on the spectrum, it's all about finding like that thing that you really connect with to like give you purpose and focus. And I didn't find that until much later in life. Yeah, so that's my only regret, is I would have figured that out sooner.

SPEAKER_02

But at least you'd found it, right? You know, because some may not even neurotypical individuals don't find that one thing. You may not think I'd say I don't really fully enjoy what I do, but you know, like uh, you know, so I'm still not there yet. Right? Okay, we're still we're still wearing it out. Yeah, I'm almost 40. So, you know, you just never know.

SPEAKER_00

So then you diagnosed like as an adult.

SPEAKER_01

Yes, I was actually diagnosed. I um just recently won't say my age too much because you don't get up there, getting up there, but let's just say I was I was over 40 when I was diagnosed initially. Yeah. Wow, okay, wow.

SPEAKER_00

What um never, never too late. No.

SPEAKER_02

What what kind of did your daughter, like going through everything with her, kind of encourage you to get diagnosed? Or tell us a little bit about that?

SPEAKER_01

So um, as I as my daughter was growing up and I'm kind of watching how she behaves and stuff, I'm thinking to myself, oh, she's a lot like me. I did a lot of these things. I had some of these same struggles, but I didn't really think anything of it until um I forgot which year it was. I was competing in a pageant. I met a lady who um her platform was about uh late diagnosis for autism and what that looks like. And she was explaining how she got diagnosed. And I was like, really? I didn't realize you can get diagnosed as a grown-up. I thought like either you it's like a thing that happens when you're a kid. And then at that point, it clicked for me, like, no, wait, when you think about it, if you have autism, you're gonna have autism your whole life, you know? And so I asked her more about how she got um evaluated for it. And she pointed me to some online surveys that there were like little questionnaires you can fill out. And if you like a certain score, you can take it to your doctor and kind of go from there. And so I filled out these forms. And when I was going to fill them out, I was like, Oh yeah, this isn't going to tell me anything. But then filled it out and I was like, Oh my gosh, there might be something to this. And so I went to my doctor, referred me to a psychiatrist, psychiatrist um to kind of go through it more and more evaluation. They had some forms that my aunt filled out because she's the only one, the closest one here that knew me as a kid. Oh, so was asking her, like when she was a kid, did she do these things?

SPEAKER_02

Okay, I'm wondering about that.

SPEAKER_01

If they go back and look, okay, they try to, well, at least my but my my clinician tried to go back to like anybody who was around me a lot as a kid to kind of see how I was. Yeah, and then um, sorry, my nose just itched for a second. Sorry. Um they're back. They have been they've been kicking EJ's butt too these last few days. Um, but yeah, so uh we turned everything in and I met with her over a course of a few months. And then eventually she's just like, Yeah, I think I'm ready to give you your answer. And I'm thinking that because of the struggles I was having at the time, I thought maybe I had like ADHD or something too. So that's initially what I was gonna talk to her about. And like, oh, by the way, I took these surveys also, but then it kind of was like, let's forget about this whole ADHD thing, let's talk about this autism thing. And then I was diagnosed.

SPEAKER_02

Wow. Wow, good for you for you know, um getting that figured out. Does that feel like it gave you a more understanding of yourself?

SPEAKER_01

And yeah, it helped me to realize like this whole my whole life, I felt like I was a stranger in my surroundings and actually sometimes even a stranger to myself. Like I would do things that I thought were normal, but everyone would be like, Why is she so weird? I'm like, why is it weird? That's just how I am. And I always like carried not a chip on my shoulder, but I always had this like self-consciousness or with being around other people and in different situations at work and personally. Um, but once I had the diagnosis, it didn't change who I was or how I act. It just helped me better understand myself.

SPEAKER_02

Yes.

SPEAKER_01

And then how and the challenges I have. Oh, that's why I have these challenges. Like, for example, when I drive, sometimes I get a little nervous and anxious if there's too many cars around. And then I ended up figuring out like um that it's because there's too much sensory input. So now I've adjusted my mirrors and how they are so that as I'm driving, I don't see everything all at once. But if I need to look in my mirror, I can just turn my head a little bit or sit up a little taller and see the mirror and like kind of keep my visual space clear. But I would have never thought to do that until I realized that I have some sensory issues with my vision. So yeah. So it's basically just giving me a lot of like bread crumbs and clues as to how I function. And so now I can figure out if there's stuff that's like triggering or that's overstimulating, and I can figure out how to adjust it to help myself. Yeah.

SPEAKER_02

Yeah. Wow. That's amazing. It's just kind of helping you see the world and adjust to help you uh succeed, right?

SPEAKER_01

Basically, yeah. So I'm kind of creating my own accommodations in a way.

SPEAKER_02

Yeah. So what are looking back, um what are some things as a kid you remember that you had challenges with?

SPEAKER_01

Um, I had challenges with figures of speech, and I still do to this day, because when I'm listening to EJ do her speech therapy, there'll be some figures of speech they say. And I think to myself, oh my gosh, what does that mean? I don't even know that one. Um, so it's kind of funny. So as a kid, there's a lot, a lot of figures of speech. I wasn't good at reading body language or like subtext or anything like that. I was very like and very black and white thinking too. Like, and then I was really rigid in my routine. Like, if something changed, that was like the end of the world. Oh there were so many things that I just thought were just a normal part of my life. And just some people just are like that that I didn't really understand.

SPEAKER_02

Yeah. Let's be real. When we were kids, you know, I'm I know you're a little older than me, but still, like it just it wasn't really like those things weren't put into this spectrum because no one really understood it as well as we do now. And you know, it just it wasn't really many resources. It just, you know, wasn't there when we were younger?

SPEAKER_01

Um, yeah, no, it wasn't. And then also um around the time like when I was coming up, like in the 80s and stuff, there wasn't a lot of research for autism in girls, um or in minorities either. Yes, like and especially in the minority community, a lot of time when I was a kid, I rarely went to the doctor.

SPEAKER_02

Yeah, and then did you grow up in Virginia?

SPEAKER_01

Um, I grew in the first part was in New Jersey, um, and then we moved to Virginia when I was a little bit older, like pre-teen years.

SPEAKER_02

Oh, okay. Um in New Jersey, there probably wasn't even a whole lot there, right?

SPEAKER_01

No, not very much. And even today, they're not as um, as far as I'm aware, they're not as up to date on a lot of autism support services and things. So, yeah, so uh it's just kind of partly I grew up at the wrong time where there wasn't a lot of like diagnostic tools and such. Um and yeah, it's unfortunate. But it's good now that nowadays more people are getting uh seen later in life, yeah, and getting evaluated and figuring out what the things, the things that they need to sort of for doing that because you know, I feel like adults sometimes just are it's too late, like or why do I need it?

SPEAKER_02

Or, you know, but there's just so much more resources available now, even as an adult, to help with life coaching skills or how to, you know, learn how to handle certain situations that you know are hard for you and just makes a better, you know, life. Like, say if someone had some other type of like condition, like say they're pre-diabetic or whatever, you're gonna do those things to make your life better and more fulfilling, right? Same thing.

SPEAKER_01

Yes. And there's a I'm a member of a few different like online chat rooms for other uh women who have gotten diagnosed later in life. And a lot of people ask that question, why well, what's the point of getting diagnosed now? Um, and you know, everyone has their own reasons to do it, but in my opinion, I think it's helpful um so that you can know definitively, yes or no, I have it. Um, and then from there you can figure out, okay, well, now that I know this, how do I use this information to help me better understand my world and navigate it? Yeah, I do think there is some use for it.

SPEAKER_02

For sure. I agree. Yeah.

SPEAKER_00

So has your um pretty much understanding your own autism helped you better understand and connect with your daughter? Yes, very much so.

SPEAKER_01

Um, because when she was younger and she would have meltdown, she doesn't have as many now when she's older, but she had a period where like she would like the smallest thing would set her off. Um, and so as I've gotten better at understanding how I react to certain situations, it helps me be more open-minded about her view on things. And like I was like that, and it's helped me to see, oh, wait, this is a situation where she might get a little agitated because of X, Y, or Z. And it helps me to be able to understand that and then based on that information, figure out a way that I can help her get through the situation a little bit better. Because I don't want to not expose her to things that are gonna like maybe trigger her and stuff, because eventually I'm not always gonna be there. Right. She needs to figure out how to handle it. So, me understanding autism from my perspective and my experiences in the past is helping me to guide her through her own experiences.

SPEAKER_02

I love it. You're such a great role model for her, you know. To you're you're showing her such a great example of, hey, I'm just like you and I understand it. I feel you, and you're gonna help her give the tools to have a successful life ahead of her. So props to you. I I just love you two so much. You guys are amazing. Um, so what are some things uh people must uh misunderstand the most about women with autism?

SPEAKER_01

Um, I think one of the things they that's not as well understood, especially kind of contributes to the whole like missing the diagnosis when we're younger, is that it doesn't present the same way in other guys will buy. Yes. Yeah, yes, very much so. Because and also I think it with women in general, um whether they're on the spectrum or not, I feel like we're more in tune with emotions and like reading people a bit more. So as when I was coming up, like I was even though I knew I was kind of weird and like when I would see a situation, and my instinct was to react to it in a very not neurotypical way, but I eventually I was able to say, Oh, in this situation before, I said this, and it was a little awkward. So, note to self. The next time I'm in this situation, do what this other person did. So I got really, really good at trying to like mimic um the actions I saw around me and like follow those away in my Rolodex of like this is how you interact in these particular situations. And I think that women are more or more adept at that because it's just how our brains work in general.

SPEAKER_02

Yeah. Yeah. That that makes so much sense. You know, I think I've heard another woman um that got diagnosed older kind of say the same thing. So uh so fascinating to learn. Uh, I love that I keep learning more and more. So thank you for sharing. Um, because I'm sure you know there could be some listeners out there that resonate, and you may encourage them to go get their own diagnosis. So let's dive in and talk a little bit more about EJ. She's such a beautiful young lady.

SPEAKER_01

Oh she is. We were just looking at her baby pictures the other day, and now she's like almost as tall as me. Um and I'm still trying to wrap my head around. Really? Yeah, I'm yeah, I'm almost I'm um I'm 5'9 and she's like five eight. She's like five eight and some change.

SPEAKER_02

Brita's not short.

SPEAKER_01

Yeah.

SPEAKER_02

Wow.

SPEAKER_01

Um, but yeah, so she um is really grew a great kid, really quiet, um, uh, and kind of keeps to herself. Uh, but when she was little, um, when she actually when she was born, she I could tell, like the way that she looked, the way she would look around and things um when she was an infant, like me and my husband at the time were like, you know what? Something's not right. And we couldn't figure out what it was, but we just were just like, well, maybe it's just we're new parents, we don't know what's going on. We'll see how, and then we tell our tell our family, like, oh, well, she's little, like just see how it progresses and all that. So we did. And then um, when I was on, we had moved for a work assignment that I had um to Wyoming. And uh she was just before two at that point. And so we did private daycare at first, and everything was going pretty good. And then um we ended up moving her as she got older. We wanted her to get like a more educational kind of experience. So we moved her to a Messory preschool. Oh and when it's when she was there that um the teach one of the teachers kind of pulled us aside and was like, hey, so we've noticed these things about EJ. And, you know, maybe um have you ever had her screened for like um learning disabilities or autism or ADHD or things like that? And we're like, well, no. And so they referred us to a doctor and we went and uh our initial doctor kind of filled out some questionnaires and everything. And so from there, they recommended us to early intervention through the state.

SPEAKER_02

Oh, good. Okay.

SPEAKER_01

So at that point, she started getting um speech therapy because she hadn't, she was hasn't really hadn't really said anything to that point, and just had like a few sounds. We had taught her a couple of like baby signs for things, but she wasn't really too with Jack, like more please, the little and then um she wasn't really communicating, and so we were she was doing speech therapy, um, she was doing physical therapy because she was missing like milestones. Um, like she never crawled. She just one day decided, you know what? I'm gonna stand up, I'm gonna walk. And she did it. And it was so cool. And we thought that was so exciting. But then we learned later that because of that, she didn't build up the right muscles that you would build up as you're crawling. So her posture when she walked and ran was like leaning forward, like she was gonna fall over. So wow. But yeah, so she was in early intervention, and that was going pretty well. And so things kind of started to improve at the preschool. But then they're like, now it got to a point where she didn't want to be around the other kids. And like if someone would come near her, she'd have a meltdown, all these things. And so then we got referred to a specialist. Um, and we had, oh, actually, there was the specialist for that part, but also at the same time, we noticed that Irma would have these weird staring spells where she would be sitting there playing, and then all of a sudden, just kind of like looking off into the distance. Ah, and then you'd call her name, and eventually she'll be like, Oh, oh, wait, yeah, I was playing and go back to playing. And so, uh combination of those two things, we had to go to Denver Children's Hospital because the town we lived in was really small, and we had that was the closest hospital. And so we went down there for a few days and she had sleep studies done, all these different tests run and thing. And then on the way back to Wyoming, we stopped in Fort Collins, and that's where we got the evaluation for the autism, it was like a whole day thing.

SPEAKER_02

Yeah.

SPEAKER_01

And then after all that happened, uh, I had got reassigned to come here to Phoenix, and we got Irma's diagnosis about gosh, like three months before we moved here. Wow. Um, so they basically gave us this big packet and said she has moderate to severe autism. This was back before they had the level one, two, three. Um, but nowadays I guess she would be equivalent to like a level two. Um, and so they gave us all this information in this packet, and they're like, here you go, good luck. And we're like, what do we do with this? And then we get and then we get here, and it's like, okay, so can she go into a right? Yeah. Now what do we do? We're not. I'm like, does she go to like do we this? Do they do it at an early intervention here? Do like do they have special programs? Like, what do we do?

SPEAKER_03

Yeah.

SPEAKER_01

Um, and we ended up calling just the general state welfare or whatever. And I was like, hey, we just got this diagnosis. My daughter has these things. They're telling me she's never going to be able to talk, never gonna be able to do anything, really, is what they told us. And so they're like, okay, well, we have early intervention. We can start with that. And then when you go to transition to your public school, they have another program that you can do once she turns three. And so we ended up getting into the um special needs preschool in our school district here. Um and then she was, and then um through my insurance, we were doing speech therapy and physical therapy and occupational therapy, which was ungodly expensive.

SPEAKER_02

So she um was she that was before she was three.

SPEAKER_01

Um so that's um after she was three.

SPEAKER_02

So she didn't get on like uh DDD or anything like that.

SPEAKER_01

Oh uh no, not at first. And that's a story in just a second, because that story was wild. But anyway, so um when she got into preschool, the the special needs preschool, she was doing pretty well, and um that's when we heard about DDD and all of that. Um that was the first time we applied and got denied because she was like three points shy of the cutoff. Um, but then we're like, okay, fine, but we still but we still wanted to make sure she had everything she needed. So I was working a lot, he was working a lot, so we can afford the money to pay for all of her therapies. Um, and then she goes through, gets to goes through what the preschool program does pretty well. She starts talking when she was about four. Um, not like a whole lot, but enough where she was talking. Um, and then it just kind of like increased from there. And we would just read to her a lot and do a lot of like games where you had to talk and things like that and speech therapy. So that worked itself out. So she was able to talk. Um, so that's one thing that they told us she was never gonna do that she does now.

SPEAKER_02

I um why do doctors?

SPEAKER_01

Like, I don't know because every kid's different and how they end up is different, and they just put everybody into a box, and I don't like that at all.

SPEAKER_02

Just with autism, but like you know, I've heard so many women say, Oh, my doctor said I'll never be able to have kids, and then they have kids. Like, I hate to say it, but you're not God. You can't you can't predict the future for somebody, like you know, unless if they have cancer and they have like you know they only they may not survive, like you can say stuff like that, but otherwise, you know.

SPEAKER_01

Yeah, yeah. Um and so uh so that was school. And then so she was in public school for a while, and then when she got to by the time she got to third, we actually typed it back. First grade was kind of rough because of the adjustment from kindergarten to first grade.

SPEAKER_02

Yeah, oh yeah.

SPEAKER_01

Um, but then when she started getting into like third and fourth grade, it was pretty clear that she was getting bullied and picked on. Um public school and they were doing nothing about it. And so I would get calls like, oh, Irma's in trouble for this. I'm like, okay, well, Irma doesn't do that. Yeah, like for example, she pushed a boy down the slide. And I'm like, okay, well, what was happening before Irma pushed the boy down the slide? Because Irma's just not gonna walk up and push some kid. Apparently, this kid was like pushing her and stuff, saying she can't ride the slide, and Irma is serious about her slide. So she's like, Yeah, okay. Don't tell me no. She went down the slide. And I was kind of like, okay, I would have done the same, but all right. So anyway, but she was in trouble. But then, and she was gonna get suspended until I raised the fuss and she didn't get suspended. But then she um when she later that same year, I think, yeah, it was fourth grade, but later that year, I was at home and I was typing and I was doing some stuff, and then I got a call from the school nurse, not the teachers, not the principal, not anything. I had a call from the school nurse who I had just seen her the day before because I've had to get a copy of her shot records for Special Olympics. And uh she told me, okay, just say no, Irma's fine. I'm like, okay, well, why wouldn't she be fine?

SPEAKER_02

You're like, well, um, don't start the conversation off like that.

SPEAKER_01

Yeah, she's like, it seems she got punched in the stomach during recess. And I was like, okay, and then and I'm and the time of day was like three o'clock in the afternoon. And you're like, I'm just now hearing recess has come and gone. I'm like, the recess was a while ago. Why? And this is the first time hearing of this. Is she okay? Like, what's going on? And then that she's like, Oh, she's fine, she's just resting here. I just wanted to let you know. And I went to the school. I got well, before I picked up Irma, I came this close to cussing out the principal. I was like, Mom, bam, yeah. And then I took Irma and I was like, you know what? This is Irma's last day here, and she will not be back. And we left. And then she's like, Well, there's forms to fill out. I'm like, well, then you can email them to me because we're done.

SPEAKER_02

Yeah.

SPEAKER_01

And I was like, I don't care if I have to homeschool her or whatever, this is not working.

SPEAKER_02

Yeah, good for you.

SPEAKER_01

Um, and she was terrified to go to school at that point. I got and um, and so yeah, so then we ended up moving her to a private school in the valley. We applied for Isa, um, got that. Good. Um, and then she went to a private school and then she started like thriving and she was catching up in school and her grades. Um, and that was one of the things too about the special ed program. The her special ed teacher was great, but she wasn't in the special ed room as much as she was supposed to be per her IEP. So it wasn't helping and she was falling behind. But long story short, yeah, got into public school. She started she started improving and everything. We moved out here, she's a new private school um and doing pretty well. And um, we recently got approved for DDD and actually just recently, um, just uh four years ago. After all these years? Three three or four years ago, yeah. Okay, wow because we applied and then we got denied and we had waited a little bit, tried again, and we just had and we I was trying to figure out what's going on. And it turns out she kept coming in like right below the threshold. And then my but she the whole time she had a coordinator through DDD that was just tracking progress and like how she's doing and things she needs help with. And then finally we got a coordinator who was like, Okay, look, we are gonna get you get this figured out as to how to do it.

SPEAKER_02

It takes someone to care.

SPEAKER_01

Yeah. And so um we went through like the normal six-month check-in questions and stuff like that. And then I got the evaluation, and an evaluation at that point, I was just like, you know, if she doesn't do it 100% of the time by herself, I'm gonna say no. Yeah, and that's what I tried to do before, but you all but you're a parent and you also like like, yeah, your kid struggles, but you kind of want to brag on the things that they can do, yeah, and that's kind of detrimental in the application process. So I was like, nope, she doesn't do it.

SPEAKER_02

And we like in the past, finally, yeah, yeah, and it's so funny because you're the second person to say that, and that's kind of yeah, when I was applying for Jackson, that's what I heard from someone else was like, don't give him you want to give him more credit because like he may do things, but if it's not a hundred percent, don't. And I was like, okay, and so it's true, you know, and that's a struggle that I'm sure a lot of moms face is you know, you want to give them that, but to get it to get that approval, you can't, you know. Yeah, yeah. It's like do you have the same issue with Kai, MJ?

SPEAKER_00

Uh yeah, three points shy. And that's when I was working for the state, and I had to it went all the way up, all the way up. Yeah, yeah. It was not a an easy process.

SPEAKER_02

It's never it's never an easy process.

SPEAKER_00

Well, go for the um evaluation. Where did I go?

SPEAKER_01

Yeah, to get no, it was I ended up when we did the final the evaluation the final time, it was during COVID. And they didn't come to the house.

SPEAKER_02

Oh my gosh.

SPEAKER_01

Yeah. Obviously, it worked out.

SPEAKER_02

So yeah, yeah. Wow. Well, let's see. You you threw flew through some of our questions. Awesome. I love it. Uh so let's see. Um you talked, oh, yeah, she talked a lot about the early signs and the indicators. Um so we'll just go to this one right here.

SPEAKER_01

This one's good.

SPEAKER_00

Um, does EJ experience any sensory sensitivities?

SPEAKER_01

Um so she doesn't like when stuff is too loud, um, or if there's like gonna be like sudden noises. She likes things to be expectable, like um uh as expected. Um so we don't go to the movie, but um, we've tried that a little bit when she was little, not good. We've even tried like the sensory special movies, okay. Um, and it's not as sensory friendly as I thought it was gonna get.

SPEAKER_02

Yeah, I we want to try that for Jackson. What like I I heard.

SPEAKER_01

I found it was still too loud.

SPEAKER_02

Okay, so and that's the problem is Jackson's loud. And that's why I'm like, I don't want him to go to those places because like I'm nervous, I don't want to ruin it for a kid that has sensory input because then too much, you know, too much sound because he'll want to run around the theater and have a good time, and that's a safe place for him to do in a sensory screening, but he's gonna be disruptive for those kids. It's too much for them.

SPEAKER_01

No, there's there's other kids that are like that as well that like get up and move around and stuff. And to me, the volume of um the movie, it wasn't as loud as like a normal one would be, but to me, it still seemed louder than it should be when you have people with sensory sensitivities. Yeah, so it just kind of depends. I would say I would recommend like maybe trying one and five, but just make peace with the fact that you might waste your money, right? Right, and that the first time we took her to a movie, we kind of like had that conversation with ourselves. Like, we think it's gonna be fun, this could work, but at the same time, we can be in here for two seconds and then peace out and just accept it. And we did, yeah, yeah.

SPEAKER_02

We we Jackson does well at the drive-ins because we um have the tail like the tailgate down and he can walk around in the truck. Sometimes he wants to get out and run around, and that's fine, it's a safe place. But Toy Story 5 is coming out. We're not doing the drive in.

SPEAKER_00

No, I really want to take Kai. Yeah, so I'd never take it.

SPEAKER_02

We may have to try it together and see, you know, you just like the front?

SPEAKER_00

Do we sit in the back?

SPEAKER_01

Definitely not the middle, like yeah, it's just I would recommend sitting closest to like an exit. Exit, yeah, yeah, yeah.

SPEAKER_02

It's so hard because you know, you have it's a spectrum, right? You have all these kids that have different sensory um sensitivities, and how does one theater accommodate all of that? You know, it's really hard.

SPEAKER_00

Yeah, I don't want to wait for them to have like a sensory screening of that because who knows when that's gonna be.

SPEAKER_01

I think they have they post it, they post them um every month.

SPEAKER_02

Yeah.

SPEAKER_01

So, like for this, so right now, whatever sense maybe is the theaters are having for next month should be posted.

SPEAKER_02

Yeah, I think so too. The Autism Society was having like um uh a group event and it sold out like that. I was like, well, dang it.

SPEAKER_00

But yeah, they're gonna have one for the Toy Story five.

SPEAKER_02

So there's certain there's certain theaters that will have uh the sensory screenings for that movie. So yeah, but it's only like one day.

SPEAKER_00

Oh yeah.

SPEAKER_02

Once a month they have it. So uh yeah. And uh EJ wears uh noise canceling headphones to kind of help with that.

SPEAKER_01

Yeah, she does, um, and not even just in theaters, like just like most places we go. Yeah, um, but lately she's been slowly like learning to not have them as much. Like at school, I was told she doesn't use them as much as school. I think mostly because she's comfortable there. But we like to go to like to like art festivals and things like that. And for those, she'll bring them with her and like kind of have them ready to go. Um, but she hasn't needed them as much. But yeah, she always carries them with her in case she and I told her because at first when she as she was getting older, and especially like when with our church group, she had commented to me that, hey, nobody else wears these headphones. I'm gonna look weird. And I then she's at that teenager age where it's like you're trying to not stand out. And so I had a conversation with her, like, you know, I I get it that you like you see the older girls and they're doing certain things a certain way, but the the difference is like you they don't need those kind of things, yeah, but you do need them because you know it gets too loud, or you know, you get nervous, and sometimes she uses them as like a comfort thing, like if she's like anxious, she'll put them on, you know.

SPEAKER_02

Yeah, I know Jacqueline does that too as a comfort thing, just for yeah. And I hear though, some some autistic individuals like the the the pressure. Yeah, yeah, yeah.

SPEAKER_01

She yeah, and she also has um, I have this cool sensory sock thing that she climbs into.

SPEAKER_02

Um, and it's like it's it's like he doesn't he tried it once and he's over it. Yeah, another one. I've got a blue one. I don't know if I'm gonna do it.

SPEAKER_01

I have two. I'm trying to get rid of. I thought it's like two, I have a bunch of sensory things that we tried, and some of them were successful, some weren't. Yeah. And I'm just like, okay, what I do with these now. I'm gonna give them away because I'm pretty sure there's somebody that could use them.

SPEAKER_02

We should have like an autism like mommy meetup where we exchange like sensory stuff. You know what I mean? So cool. Let's try to put something together, maybe like an indoor thing somewhere, uh like out of church or something. And people can just exchange sensory toys that their kids don't use and that you may need, right? Yeah, very true. Same thing. I have a bin full of stuff that I tried for him and he doesn't care.

unknown

Yeah.

SPEAKER_01

Yeah. And that's the other thing, too, because of her sensory issues, especially with like fabrics and clothes, it is so hard to figure out what she will and won't wear. And it used to be when she was younger, I would just buy her clothes, but I could tell sometimes she was fidgety because the clothing felt weird. Yeah. But now if we go to the store and I'm like, okay, you're coming too because and then she'll she'll like touch it, and she's like, No, no. Oh god. But it's been helpful because now I don't waste money on clothes she's not gonna wear.

SPEAKER_02

Yeah, and that's a great thing about you know Kai shoes for Kai.

SPEAKER_00

Yeah, yeah, it's so bad.

SPEAKER_02

So she does not take shoes off at school.

SPEAKER_01

She has to wear either cracks or um flip-flops, not flip-flops, but like the slide ones. Oh, yeah, because she doesn't like clothes and shoes unless it's absolutely necessary.

SPEAKER_02

Yeah, and luckily our winters don't get that cold, right?

SPEAKER_01

Yeah, yeah.

SPEAKER_02

You know what I just thought of. Um now that she's getting older, and if she's more uh aware of you know, wearing those that unlike the other kids, have you seen like they're almost like earbuds, but they're noise based on?

SPEAKER_01

I have those. She doesn't like I tried to try them, but she doesn't like stuff in her ears.

SPEAKER_02

Yeah, so she reflects the other ones. Yeah, I feel like maybe more so adults, you know, that sounds to it. Yeah.

SPEAKER_01

Yeah, and that's actually why I bought mine, because I um have always had like sound sensitivities to things, so I've just kind of like dealt with it. Yeah. Um, but then when I realized, hey, I have these sensitivities because I'm autism. I don't, I don't have to like I can like allow myself to protect my ears and make it so I'm calm. Um, and so I tried the actual like over the head things, not for me, because I don't like I don't like the pressure. Yeah um so I in one of the chat groups, a lady was mentioning how she had just got these cool earbuds.

SPEAKER_02

Yeah.

SPEAKER_01

And yeah, and they work wonderfully. That's that's great.

SPEAKER_02

I just got some for my mother-in-law. Um, because she has when we go places, um, if it's too loud, she gets a little, you know, overwhelmed. So and they come in like these cute colors and stuff. And I'm like, bad time, right? Um speaking of her being a teen, what has it been like navigating her teen years now versus her childhood?

SPEAKER_01

So it it's um been interesting so far. Uh it's been four months of being 13. Um, and like when she turned 13, it wasn't so much like it was almost like a switch to trip. And she's like, I'm no longer because she's my Irma has very black and white thinking. And so it's like, I am no longer a kid, I'm a teenager, so I need to act a certain way. So, like all the other stuff is like this is for babies. And so now I'm getting ready to go through her room this summer, and like all the toys she doesn't want anymore and whatever, just kind of like get those out because she's like, I'm a teenager, I have to do a certain thing, I have to have a certain look. She talked to me about her drip, um, which I didn't know what that was until she got dressed and I was trying to fix her shirt. I'm like, this is crooked. She's like, Stop, it's supposed to be that way. You're messing up my drip. I'm like, okay. And so her learning all the new wingo, um, and then changing like she only eats, she's very, because of her sensory stuff, she's very like selective on the food she eats, and we're working through that. But um, all of a sudden, foods that she liked, she's like, Oh, well, I um like the big kids at school don't eat that. I'm not eating that. I'm like, oh my gosh, you're ridiculous. So it's been challenging, like just to like watch.

SPEAKER_02

She's yeah, it's only been for me.

SPEAKER_01

Try the things that the other kids have. She has, but it's been good because um, yeah, so now she eats rice cakes, which she would never have touched before, but one of the older girls was eating them in her lunch. So now we do rice cakes.

SPEAKER_02

Flavored ones or just the plain one? Because the plain ones are flavored ones flavored. Yeah, I was like, the caramel ones are the best.

SPEAKER_01

She likes the white cheddar ones the most. But yeah, the flavored ones. But yeah, so it's been good and bad. So like the adjustments of like watching and modeling what the older kids are doing at her school is really helpful in some ways because it's like letting her like expanding her mind. She wants to try new things. Um, but at the same time, you I could see the struggle within her of oh, Paw Patrol's on. But she loves Paw Patrol. But she's like, Oh, but I can't watch that because I'm a teenager. Yeah. So, but I'll catch her like watching stuff without us. And just yeah, so it's it's been a fun transition. Um, and definitely uh there was she had some uh struggles with dealing with the fact like her body was changing, yeah. And she was growing, and she's like, and she was crying and upset, like, I don't want to change, I don't I don't want my body to be different. I want to stay might want to stay a kid, and I was like, and I get that, and trust me, I still want to be a kid, but like this is part of life. And I there's these I talked to her doctor about I'm like, how do you explain this to a girl that's on the spectrum? Um, and then she referred me to some books that I found on Amazon, and I want to say the book was called like um something a special growing Ellie or something like that, but talking about this girl, and it basically kind of goes, and they have one for boys too, um, where it talks through like puberty and emotional changes and stuff in a very matter-of-fact, straightforward way, especially for those on the spectrum that need that, right? Yes, yes, exactly. And it worked perfectly. Um, however, I do recommend uh any books you find, read them yourself first. First so you know what the content is. I just read it with her in real time. And the part where it talks about like your period and like the body parts, like it had a drawing, like a diagram of like very, a very like scientific looking drawing. Like, this is what everything looks like, this is where stuff is. I was not expecting that. I turned the page and I was like, oh my gosh, okay.

SPEAKER_00

Well, I guess we're we're all in now.

SPEAKER_01

And I'm trying to like not laugh and I'm trying to like be serious and just read the page and like not give any kind of emotion. And then and then at the end, I gave her a little quiz, like, okay, so what are the butt of the parts? What is this? What's your period? And then she's got and she's like, Okay, and she got it. And I closed the book and I left the room. I was like, Oh my gosh, I cannot believe that just happened. Oh my gosh.

SPEAKER_02

Um, so at the time when you read it to her, she hadn't gone through that change yet.

SPEAKER_01

No, not yet. Okay, so that was it was about it was about three or four months before. Wow. Perfect timing. And then when it happened, it was so funny because she just very matter of fact, I was actually in my office typing and she knocked on the door and said, Hey mom, are you busy? And I was like, Um, yes, but I'll be out in just a second. So another 10 minutes goes by. I go out there, I'm okay, what's up? She's like, Oh, my period started. I was like, Okay, so that's information that you need to tell mommy to stop working and come hoping for. Like, that's not a wait a minute thing.

SPEAKER_02

You have to like say something, and then all on the spectrum kind of yeah, respond, oh mom's busy.

SPEAKER_01

Yeah, yeah. And then she's like, but but it's fine. I was like, okay, so do you know what to do? She's like, Yeah, I I went, I got the pad, I put it on. I'm fine. And I was like, Oh, okay, well, let me make your mom, like you're you're just like, what?

SPEAKER_02

You don't need me? What? Exactly. I was like, this is supposed to be a whole moment. Like I'm supposed to have a freak out moment here.

SPEAKER_00

I gotta blame the book.

SPEAKER_02

Like I prepared her too well.

SPEAKER_01

Yeah, um, but it was it's good because then it didn't need to be awkward or And she she does and now she just like whatever about it. Go for and yeah, so it's been fun like navigating the whole teenager thing.

SPEAKER_02

Yeah, and you I mean, if you she just became a teenager, so you've got like you're gonna have a whole nother four years of this.

SPEAKER_01

Yay!

SPEAKER_02

Give it back to me next year. We'll talk. It'll be a whole other bowl of game. Well, I hope she continues to, you know, uh be encouraged by others of exploring the world, but not feeling like she's pressured to like things that she doesn't need to like just because others do. So, but she's got a great mom to help navigate through that, right?

SPEAKER_01

That's gonna be definitely not shy about saying what she doesn't like. She will tell you.

SPEAKER_02

Oh, good.

SPEAKER_01

In the most brutal way possible. She's a little bit of a savage when it comes to like sharing her opinions.

SPEAKER_02

Oh I just adore her. My goodness. Uh so uh go ahead and ask that last question, MJ.

SPEAKER_00

Uh, what differences have you noticed between childhood and the teen years? Okay.

SPEAKER_01

Um, so I've noticed when Irma was uh younger, she was um very almost like a ticking time bomb a little bit, especially because we didn't really fully understand, especially when she was like just diagnosed until about like kindergarten. We didn't really know what autism was, what it meant, and like that there were sensory things about it, um, and all these different things that were like impacting her and causing her behavior, like the acting out, the meltdowns, the all the different things. Um, but then as and then, but once we figured that out, um, and we've gotten her like the right therapies and different things to help her have better coping skills for those external stressors, like over time to how she has now seen a lot of growth in how she's able to now like identify, okay, what's a big problem that I need to freak out about versus what's a not so big problem that I can kind of like figure out a way to deal with it. So she's getting better in general, just emotional intelligence and getting developing better coping skills and learning how to relax and not have such black and white thinking. Yeah. So I think she's slowly like figuring out how to like navigate, yeah, with age. She's kind of figuring out how to navigate things better. Yeah.

SPEAKER_02

As we all kind of do, it's just those on the spectrum navigate and learn in a different way or a different base, right?

SPEAKER_01

Yeah. And she used to basically she used to go from zero to like 10,000 in like two seconds. Oh wow. She has like the ability to stop and think for a second. Like, why am I getting upset?

SPEAKER_03

Yeah.

SPEAKER_01

And then also because she's been working with speech therapy all these years, she's now able to communicate and say, Hey, can I talk to you for a minute about this thing that's bothering me?

SPEAKER_03

Yeah.

SPEAKER_01

So really learning how to like advocate for herself too is really a big thing we've noticed. I am. Uh, because that's one of my big was one of my biggest worries for her, is like, you know, I'm not always going to be here. So is she going to be able to take care of herself? Is she going to be able to communicate? Will somebody take advantage of her? Like, what would that look like?

SPEAKER_02

And like especially you, especially a girl. I can't. I'm not sure. And those extra fears that you may have.

SPEAKER_01

Yeah.

SPEAKER_02

Well, good for her. I bet you're so proud. I love it. Aw. Um, let's talk a little bit more about services. You told us a little bit. Um, did she receive any ABA or you didn't go that route?

SPEAKER_01

So um she's approved for it. And we're gonna talk to her doctor about it because the um reason why we weren't sure if you wanted to do it or not is because she doesn't have any of like the typical behavior. She doesn't hit people, she doesn't like try to, she doesn't try to run all these different things that I think of when I like those are things I've always instantly ABA equals these certain things. But I've been doing research lately about like other stuff that ABA is good for, like with her feeding challenges, where she's afraid to try like is that she can feed the feeding therapy, right? Yeah, well, we did feeding therapy when we were in Gilbert, um, but I didn't think it was super helpful. Oh I feel like we actually've gotten better results through occupational therapy when it comes to the food because they do what it is, right?

SPEAKER_02

With them, yeah. Yeah.

SPEAKER_01

So um with her, it's well, it seems like because um one of some of the things they work on OT is like following directions and like how to like sequence things. And if they're sometimes they do recipes, and if it's a recipe that Irma has like contributed to and hoped to do, she's more likely to try the thing. Oh so with her OT, I've been kind of coordinating like, hey, let's try making this.

SPEAKER_00

Um but I'm like hi, MJ. Yeah, he would not eat a sandwich until we um gave him a deconstructed sandwich and he got to make his own sandwich and then he started eating it.

SPEAKER_01

Wow. That is really impressive that you got him to eat the whole sandwich. Irma is still doing deconstructed sandwiches. Everything I make her is deconstructed.

SPEAKER_02

Yeah, same thing with Jackson. It's yeah, sandwich put together. Um, but yeah, hamburger is the best that I can do for some reason. And it took a while to give him to eat a hamburger.

SPEAKER_01

Oh, we haven't even done hamburgers yet. Oh, really? Oh, that's because they're trying to explain like that ground fat steak. She likes steak. Steak is the same thing as hamburgers because it's just ground beef, it's just the steak chopped up and put in a different format. And then she's like, Yeah, no. She's very black or white, so it's like she's like, no, that's not steak. Um, so anyway, but with the ABA, um, we're thinking about doing it because there are some like feeding things that they do in AVA that could help. Um, but other than that, just um, she doesn't do physical therapy anymore. She's finally like walking upright and everything and can run without tripping and falling over. So we're good there. Um, but she still does OT and speech therapy. Um because there's still she can communicate, but there's still a lot of sounds that she just doesn't get. And um, like when we're talking to her, we understand her completely because we've had 15 years to get used to how she says things. But if you're if you just like walk up or try to have a conversation, sometimes you'll be like, I have no idea what you just said. Um, so yeah, so we still work on that. Um, we've been also trying to work on socialization. So we were doing Special Olympics for a little bit. Um, but she has since communicated to us that she doesn't like sports. Uh and she like she likes to read and does like art a little bit. Like, okay, cool. We can we don't have to be a sports person. No, um and I actually was mostly doing it just to get her out to talk to other kids.

SPEAKER_02

It's an evolvement, yeah.

SPEAKER_01

Yeah, so now instead of that, she um is part of the youth group at church. Um she goes to that. Um, it's just yeah, so it's just as she is evolving as a person and we're seeing what new things she has trouble with, we're trying to like find a therapy or some type of situation to help with that.

SPEAKER_02

Yeah, that's great.

SPEAKER_01

So it's all an ever-evolving process.

SPEAKER_02

That's so true. And her school, you said she goes to a private school now. Is it an autism private school or is it yeah, no, it's not autism private school. Okay, good. Yeah.

SPEAKER_01

Uh, you don't have to tell us kind, but uh is it is it the same one she's been to for a while, or no, we had to change because the one that she was in when we were in Gilbert, they don't have a campus out here. Oh um, and the closest place that they would have a bus is like almost in Maricopa. And I'm like, yeah, no, we're not driving to Maricopa.

SPEAKER_02

That's from Lynchfield, that's like an hour and a half drive.

SPEAKER_01

Like it's forever. Yeah. Yeah. And it's it's not I'm like, like, I want to I love the school, I love the teachers, but it's not worth it. Um, so we ended up putting her in um uh autism charter school um when we first moved here, but that didn't work out for us, and that one was actually kind of far too. That was almost in Phoenix.

SPEAKER_02

Yeah, that's um the one that's it's oh, they have a they have a location in Phoenix, but they have another Peoria one, which we are trying to get into. And uh yeah, it's hard to get in the library system and all that.

SPEAKER_01

It was, yeah. And um, so she was there for a couple months at the end of the school year of that school year when you first moved here, um, but it wasn't working out for us for us because it was too big for her because the class was but like it's all like special education, but the class sizes were a little big for what she could tolerate. Yeah, where she's at now, it's a smaller her class only has like about 12 kids in it.

SPEAKER_02

Oh god.

SPEAKER_01

Um, and part of the instruction is one-on-one for math and language arts. So it's she needs she's academically, um, she's pretty bright and she can like pick up on things, but she needs more like one-on-one time.

SPEAKER_02

Oh, it's like so we moved her.

SPEAKER_01

Yeah, so we moved her to a school that kind of had that situation for her.

SPEAKER_02

Oh good. Yay.

SPEAKER_01

Does she have a favorite subject? Um, she likes drawing and art, um, but she also likes math a lot. Ah I was gonna say she's in things. Yeah, but she's not into space at all. Oh not even a little bit. Not even a little bit. No, like the last time SpaceX had a launch, I was like, hey, um, hey, there's a launch coming up tonight. You want to sit and watch it with me? And then she like looked me dead in my face and was like, I don't find space exciting like you do, mom. I'm sorry. And then she just walked away, and I was like, that's okay, you don't have to like that. I was just thinking it would be fun to watch together. Yeah. Um but yeah, but like I said, my daughter's damage.

SPEAKER_02

So I love, I love like watching like you know, love on the spectrum or things like that, where they're like, I don't like that. Why do I want to watch that? You know, they they don't understand that I'm enjoying that show.

SPEAKER_01

That's right. It's so awesome. I then like and how they interact with each other. I'm like, oh my gosh, I've totally said something like that on a date before flashbacks like deja vu. Yeah, because like early on dating like um was horrible, um, absolutely horrible. Um and I would try so hard at it because I'm like, I don't want to be like there was this idea of like when you get a certain age, you have to like find somebody. And I was like, really, like wanted to do that, and it was not working out for me. And I was like, this freaking sucks. Um now I understand why it wasn't working out in a lot of ways. So yeah, I love that.

SPEAKER_02

I bet that show like gives you great hope for her future, right?

SPEAKER_01

It does actually, it really does.

SPEAKER_02

Yeah, it's I know I'm obsessed with that show. Did you watch the new season?

SPEAKER_01

Not yet.

SPEAKER_02

Not yet.

SPEAKER_01

I've been busy.

SPEAKER_02

You guys, I'm like April 1st, I'm like, I am ready. I was like, both both the guys are asleep. I'm like, it's like 9 30, and I'm like, okay, I give myself one episode. And then I get into the second one. I'm like, nope, nope, one episode, I gotta go to bed. And then if it's a Friday night, forget about it. I was like, sorry, babe, I'm binge watching. It's so good. They have some new uh new cast members, some returners, uh, but it's really good. We'll have to get your let me know when you guys watch it because I know MJ, you haven't watched it yet either. No, please let me know when you watch it and tell me what you think. All right, shout out to our graphic design sponsor, My Spot Design, Lindsay. Thank you so much for adding our wonderful little backgrounds to our virtual episodes.

SPEAKER_00

Yes, they're so beautiful, despite all the colors.

SPEAKER_02

I know, it's like it's staying right on brand. I love it. It's colorful, just like you know, autism's very colorful. So great job, Lindsay. We appreciate you. And uh thanks everyone for your support. Yes, thank you.