Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Parent the Child, Not the Diagnosis | Nora Canzoneri on Autism, Acceptance, and Letting Go

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Parent the Child, Not the Diagnosis | Nora Canzoneri on Autism, Acceptance, and Letting Go · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: All right.
• 0:00
  Speaker B: Hey, everyone. Welcome back to the Inchstones podcast. Sometimes when I press record here, I'm always laughing with my guest beforehand because the reality of real life and then sitting so nestled deeply into what is reality with children with autism. And today on the podcast, I have a dear old friend of mine, Nora Canzoneri. She is not Italian, as you can see by that beautiful red hair has preceded her in life in any capacity. I think of that beautiful red hair. The next thing I think of is Cam's mom. And I'm gonna get choked up saying that. Exactly what I think of. Like I, you, you have such this beautiful presence. But the next thing I think of is that you are Cam's mom. And Cam was diagnosed with autism probably around the same time as Milly was, I believe. I think they're around the same age. And we have shared a parallel yet very different journey since diagnosis. And we are here to just have Nora, you know, talk a little bit about her path and where she was then and where she is now. So, Nora, thanks for being here on
• 0:56
  Speaker A: Inchstones Thanks for having me. This is the first time I've been on a podcast, so I'm excited.
• 1:01
  Speaker B: Well, that should not be the last. This should not be the last. You need to diagnosis day. What were you feeling and what did you expect?
• 1:11
  Speaker A: It's funny cuz I can still go back there very Clearly. It was June 27, 2018.
• 1:17
  Speaker B: Everyone can name the date, right?
• 1:19
  Speaker A: It was a couple days before my birthday, so it was definitely ingrained in my memory. My son Cam was born in 2015. Yeah, he's just, I think maybe four months younger than Milly April, right? Yeah, yeah. You know, kind of similar. I will say as a very small infant, he didn't display a lot of signs of autism. I mean, he smiled and he interacted, he made eye contact. Even at his 18 month assessment, most of the things on the checklist at the time, he would imitate and, you know, do that kind of thing pretty easily. However, he was not talking at all. Um, I have a very clear memory of a friend of mine coming to visit around Christmas when he was, you know, one and three months or whatever it was. And her son, who's 10 days younger than Cam, was answering questions very clearly with a no. You know, we were nowhere near that. So it was definitely, you know, a little bit of kind of a trigger point there. He did have a couple of words early on. He would wave and say bye before his first birthday. I recall that. And then, you know, really nothing, I mean, sounds, you Know, in hindsight, of course, now I understand a lot of these were attempts at approximations, but you know, then, you know, and even I feel like 10, 11 years ago, we had so much less dialogue, you know, the Internet wasn't here, you know, in this way.
• 2:41
  Speaker B: So true. It's changed insight even within these past 10 years. I mean, it's hard to even imagine it's been a decade, but it really has, like what was shared and how it was shared and the scope of. I mean, I'm not a TikTok. Like I try to be a TikTok, you know, person, but I can't be innately there. Just it wasn't as in our face and like just accessible, like, like in, like Instagram has made it.
• 3:05
  Speaker A: Yeah, very true. I mean, and. Right. And everything definitely felt more clinical even then, you know, if you did find things, it was kind of more like very official, you know, and you know, as those of us with children with autism know, it doesn't always fit into that box the way it's described in an official capacity. So we probably bargained with ourselves a lot.
• 3:26
  Speaker B: So take me back to that day in June. So how did, how long was your process? Was that easy for you? Was it hard? Or do you really push past that and think, okay, we're here now and we've received a diagnosis. You know, you left that room thinking, what?
• 3:39
  Speaker A: I mean, honestly, shock. Because when we went in there, it was our first appointment, you know, was with the developmental pediatrician. We had obviously been working with our regular doctor and we had done early intervention, you know, but at that stage they're not using the word autism more, you know, speech delay, you know, whatever. And the doctor we saw, you know, I have to say I've had mainly pretty good experiences with the aides and the doctors and the educators that I've worked with. This person came in, like, yelled Cam's name at him a bunch of times, went off, you know, a three hour assessment. I walked out the door with an autism diagnosis and a three page printout to find full time ABA and read some books. Were you alone? I was actually alone because at the time my husband was traveling extensively for work. My father had leukemia. He would pass away a few months later, so he was not really able to help a lot in that capacity. And honestly, I thought we were going to meet the doctor. I didn't realize you would leave, even though I kind of knew it was coming. I didn't realize you would leave with a diagnosis in like a two hour window. That really Shocked me, honestly.
• 4:45
  Speaker B: Yeah, I think it honestly, like the, the juxtaposition between other health issues too, in life. Like, when you think about that, like someone spends two, two to three hours with your child, I, I, it's taken me months to diagnose that. I have like, like arthritis in my left knee. Like, months, like, right, right. So. And that, that, like, that, that took. How can. In two to three hours. And then I was actually just down in D.C. talking to other people about this. It's so visually, clinically, like, behaviorally based that those two to three hours, we, we have a really hard time. Ex. Like, even, even as a primal woman thinking, how dare you only know my child for two to three hours. Even if this is true, how dare you? And it's because, because it juxtapos, it sits, it goes the complete opposite whenever you have an actual physical issue where it takes months.
• 5:39
  Speaker A: You're 100% right. I was really, I mean, honestly, I was probably angry and not at the diagnosis, but just at like, how clinical you use that word. It was handled, you know, and really, I mean, find ab. I'm like, what does this even mean? You know, I'm like, give me some idea of, you know, luckily I had some people in my life, you know, that could direct me because I'm like, I don't like what, I'm like, what, what does that mean? Like, you know, good luck, you know.
• 6:02
  Speaker B: Yeah. So do you feel like where you were regionally helped with that in terms of, you know, getting everything set up like, here I, I was, I was obviously never in a million years thought I'd be living in the state of New Jersey, but I realized that, like, that, that was such a benefit to me whenever, how fast it all happened. Do you feel like where you were regionally helped with that? Because a lot of, A lot of parents talk about, like, even once a diagnosis, like, they don't even have the resources to, to Google ABA and find a center. Or did you, did you find that that was helpful, or was it too much information, too many choices?
• 6:38
  Speaker A: No, I mean, I, I thought it was really helpful. We live just outside of Philadelphia, about 10 miles outside of Philadelphia. We got the diagnosis, you know, in the city. We lived in the city for many years. We have, you know, just a website at the time called ABA NPA that gave all of the practitioners. And I mean, I'll be honest, I probably went into, I mean, 20 of them, you know, just like the same way when you're looking for a job putting out resumes, you Know, just kind of reached out to everyone I could. You know, heard back from two or three pretty quickly, actually. Unfortunately, the first one I heard back, this was, I'd say, probably the first week in July. You know, right away I was just like, we gotta get this started. Um, that's just my personality. And I was working through the process with one provider, and they, you know, had the insurance approval, got everything going, was supposed to be starting to work with someone. I remember because it was the middle of October. My aunt and uncle from Ireland were coming to visit. I was picking them up at Newark Airport, and I got the call that they didn't have anybody. So I had to start again with a totally new provider who turned out to be absolutely wonderful. Had somebody in my home, I'd say, six weeks later, it was the first week in December. And we worked with them, you know, through school age for Cam. So it was a happy ending. But, yeah, I mean, if we hadn't had that available. I don't know what. I say that all the time. You know, I mean, we have the resources. We have the access, you know, we have the, you know, educational background to dive into it, the financial resources when we've had to pay for it. Because, as you well know, that is not an easy feat.
• 8:12
  Speaker B: No, I mean, that's what is so nestled. I was. I've been hearing this from so many, and I. I felt this too. But it's nice to have it, you know, amplified. It's this stacking nature of, like. And it. And it begins. I think it ends with this sense of urgency that is, for some reason, baked into this system. I know I heard so clearly very early on, you know, the brain, the neuroplasticity is the highest before the age of five. And when Milly was, you know, diagnosed at, you know, two and a half, just over two and a half. And then that. That urgency, and maybe that's just my own adhd, but, like, that sense of, like, impending, like, have to get something done. It's almost like I'm being chased by a bear every single day. And I. And I don't know how, like, that becomes the norm for all of us, because every single mom I've talked to is like, I just knew I had to get at it, because it almost felt like if you didn't your child, like, you were a bad mother. Like, how dare you delay this? When at the end of the day, like, what were you delaying? Like you were still loving your child through the process of deciding. But the sense of urgency was like, I mean, it's, like, tangible to me, and it never goes away.
• 9:24
  Speaker A: No. And I think you hit the nail on the head, saying, you know, the. The age five, I mean, that was in my brain, and honestly, it kind of felt like I beat the clock. Like, I mean, I knew that this is something we were going to live with. I knew that Cam wasn't going to wake up one day and just be typical. But I think I did believe that if we really went in very hard in the beginning, we'd be further now at almost 11, you know, than we are. And in reality, to your point, as I know now with some of my own, you know, physically medical things, I've been going through that. Yeah, you know, what, a week, two weeks, a month. Unless it's, like, really gonna get you in this exact moment, it actually doesn't make a difference. It needs to be a pretty. Well, you know. And again, this is not advice for anybody. There are certain things that are urgent, but, you know, a lot of things really are.
• 10:04
  Speaker B: I was talking to a mom recently, too, that said, you know, the sense of the minute. The minute marker, like, was actually. And I didn't know this until recently, was actually like that division of time is actually more modern. So we, like you and I, were. Were born into a raised a place in a sense of. At a time in time where, like, every minute, we just. That's all we know. Like, we know time and, like, this urgency rush. And so when time is broken down so much, it loses its sense of flexibility for us to just let it be and to. And to take form because of the urgency baked into, like, every second, every. Every minute, you know?
• 10:40
  Speaker A: Absolutely. Yeah.
• 10:41
  Speaker B: Do you think I. I heard you say. And I don't think many moms say this, so I wanted to go back to this. You knew he wasn't going to wake up, and it was just going to be different. Why do you. Why were you like that? How do you think you were like that? Because I think a lot of moms, and myself included, I thought maybe if I just keep praying one day, one of these therapies is just going to have this. Aha. Like, light on. And I didn't have that, and it took me a lot longer to get to that point. So how. How did you. Because that came across really naturally.
• 11:11
  Speaker A: I mean, I think it's. It's partially not interesting because it's just sort of who I am as a person from some other, you know, challenging experiences I've had where maybe I was just stealing myself for it. So if it happened that that was the case, it would have been like, wow, this is, you know, so much easier than I thought it was going to be. But when it wasn't, I was more prepared. You know, I often joke that I have really low. Which sounds negative, and I don't mean it at all negatively, because if I go into something just expecting whatever. Right. I'm not going to say worst case scenario because that's much more dramatic than I mean it to be, but that usually I am pleasantly surprised. Usually it ends up being easier than I thought it was going to be. There's a more, you know, some sort of a positive outcome, even if it's not entirely positive. You know, most of the time, I'm happy I did it, you know, And I know you can relate to this as someone that is, you know, kind of naturally, not always really. It's not always easy for me to put myself out there, which talking here like this with you or even if you can read it on Instagram, seems like that's not true. But to your point, when it's a direct interaction, it's very different. You know, it's kind of just like, easier to, you know, compartmentalize those things.
• 12:22
  Speaker B: Yeah. I mean, again, I don't know what point my lens. Like, I feel like I had motherhood and again, having a typical, you know, teenager. Like, I had motherhood like this, like, this really, like, thin, like, monocle like I was, or like, like, lens I was looking down and like, I think about even just, like, when I do that, like, how clenched my fist is and how, like, I had, like, I just was seeing it. Like, I was like, nope, I see it clearly. I don't think seeing clearly and having, like, no slack is talked. Talked about enough in this autism motherhood space. Like, there's a difference between having, like, expansive clarity and acceptance versus this, like, you know, single point of failure. Like, and that's what I had to learn. And maybe that happened actually when Mac was diagnosed. And I realized, Sarah, like, this is where you. You have to let go. Like, you have to let go on this, like, very, very thin, like, razor's edge of what I expected motherhood to be like. And I think the diagnoses. I'm really. I'm just really glad that you're. That you're saying, because I think it's a gift. That it's a gift and it's probably a burden, too, to have known more. More on the earlier side that, like, this probably isn't going to go away. So let's keep hacking. Let's keep. Let's keep, you know, blazing the trail.
• 13:42
  Speaker A: Yeah. Yeah. You know, that kind of idea of letting it go, I. I've realized in many capacities that, you know, we have very little control. I mean, obviously we can control the minute, but we really can't control the day. I mean, when you look at it, you know, in a sort of a microcosm and macrocosm kind of way, and I think that applies to so much in our lives. And. Yeah, I mean, you know, I love your term Inchstones, because it is just so true. I mean, from those early days till now, you know, I mean, the progress, for a lot of people, it's jarring because, I mean, you know, it is very slow and, you know, for. I think I can probably make this assumption about yourself, much as, you know, myself. I mean, I was kind of an overachiever my whole life, so I. I don't have a lot of ground to relate to that. And it has been very, very enlightening.
• 14:28
  Speaker B: Yeah. I mean, I always. Again, not to get, like, cosmic on us, but, like, I always think that, like, okay, my soul chose this journey. All right? Like, so there some. At some point, the soul in me chose this journey. So nothing that I come into now, I sort of go, that was my soul's choice. Here we go, right? Where do you feel like you are now, you know, 10, 11 years into being a mother and where this settles? Like, do you. I know we were saying before we press record, sometimes these hats we wear of, like, Sarah's the autism mom. And, like, in my town, anytime someone has a kid that's diagnosed, they're like, can we talk to Sarah Kernan? And I love that. I love that. And I also am like, well, when am I just Sarah, or is that non existent anymore? And I think that I've gone through evolutions of self through this being. And I love. I love that I'm the autism mom. I love that I can. But where. Where are you now with it? Does it. Is it. Has. Has that been shed? Are you just Cam's mom? Do you find that, you know, are you settled into this just much more, you know, peacefully, or do you find that there's just chapters still to go through?
• 15:36
  Speaker A: Absolutely. I mean, in some ways, I think this age is harder because, you know, young kids all kind of run around in circles and don't pay attention. And, you know, you can, for lack of better phrasing, blend in better, you know, and now at this age, the differences are so much starker. So I, I do think in a lot of ways it is almost harder because even if, yeah, I did sort of appreciate that I probably was gonna be doing this the rest of my life, you know, seeing all of my friends, kids, you know, we talk about milestones up to age one and they're, they're very specific and tangible, you know, but like, at 10, right. I mean, you think your kid's going to be, you know, going to birthday parties, you think they're going to be, you know, hanging out with friends. You think they're gonna be able to roam around in the neigh neighborhood for, you know, an hour by themselves? These kind of basic things that, you know, we, we. We don't live.
• 16:29
  Speaker B: It always challenges me to think. And I've been saying this a lot on these episodes in May. I can't believe I was so programmed to expect something even along the line, even in celebrating all the small wins. I mean, I'm so blown over by how incredible Milly and Mac are, and yet I'm still walloped some days by how programmed I was to expect something different. And I don't. And I, I know you, you consider yourself. I consider myself like a fairly highly intelligent person. The fact that I was. That duped shows you how strong the medium of, like, growing up in the 80s and 90s, going to a phenomenal university, having all these experiences, you know, living in major cities, you know, getting married, holding jobs, like, traveling the world. It's incredible how unconscious we are to the conditioning of what motherhood is to be. And I. Absolutely.
• 17:24
  Speaker A: Yeah. Because we were checking boxes.
• 17:25
  Speaker B: It bothers the crap out of me that I'm. That I, That I succumb to it. It bothers the absolute crap out of me.
• 17:31
  Speaker A: I mean, I think that awareness, you know, really, that's the best we can do because we're all human.
• 17:35
  Speaker B: Exactly.
• 17:35
  Speaker A: I mean, I've given myself a lot more grace with that. Yeah, I mean, you know, like. Right. I, you know, I have a lot of, you know, especially my, My best friend who, you know, we've been friends for 30 years from high school and, you know, we're very intertwined and everything. And she's always telling me how patient I am and like, yeah, I guess I am. Like, of course all I see are the moments that I'm not. You know, like, all I see are the moments where, yeah, I'm human. You know, like sometimes I'm like, I can't take the noise. You know what I mean? Like, I just, like, I, yeah. Overload. Like anybody Else does.
• 18:00
  Speaker B: Yeah. Something I want to touch on that you and I do similarly, that not a lot do. We are both big travelers with our kids. And I know that you travel and you're international. You got a family in Ireland. You do not take travel to be anything more than just how your family lives. Talk to me about that with Cam now versus earlier on.
• 18:19
  Speaker A: Yeah, so, I mean, now, like, definitely when Cam was small, he was about five when we did the first long road trip with my friend. We went to Yellowstone National Park. We drove across the country. We were gone for almost three weeks. And before that, we. We didn't really do anything for a number of years, mainly because the ability to sit still was just not. It wasn't there at all. Cam is kind of funny in the sense that, like, if he's given exactly what he wants, he's pretty good at, like, sitting still. I mean, for him, you know? Yeah. Like, if you let Cam, you know, watch an iPad or drink Sprite or, you know, eat pink dum dums or whatever it is on a given day, he tolerates that, you know, because there's no actual demand besides just, you bet.
• 19:04
  Speaker B: I always go like, you. You qualified. All the things that I effing love. Thank you so much. I'm happy to do whatever you want, you know?
• 19:11
  Speaker A: Yeah, well. Yeah, I mean, you know. Well, and I know you're like this too, you know, I mean, even with Cam having, you know, a disability, I mean, I, you know, am always someone that has wanted to live my life. You know, I lost my mother when I was relatively young, 22 years old. She was 51. I mean, I'm not waiting for retirement because I don't know what the future holds. So that kind of meant that, you know, he's gonna get packed up and come along and we definitely beat him
• 19:38
  Speaker B: in the middle and give. Give people that are listening this, like, how was that? Because I'm someone, like, if. If. I don't know if make a wish told me, like, hey, you can go to the Philippines with Milly and you gotta be there in 24 hours. I'd be like, yeah, I can do it. Like, we'll get there. I mean, right. Gonna be hanging onto the side of the plane, but, like, million's gonna be great. I mean, what. What did that three week look like? Because I love that. Like, if I had, like, the ability to that, like, I absolutely would do it too. Talk about that prep. Talk about, how did he do? Was it. Were you in your own car? Were you sharing an rv Like, Because I love this. I love the fact that you just went. And then again, nature. You're heading to, you know, a national park, which is. These kids love that.
• 20:18
  Speaker A: Yeah. So, well, we, we actually all drive in her minivan. She has three kids, so the four kids are all in the back. They all at this point have their kind of assigned seating. There's always a DVD playing. I mean, at this point, Cam is very used to her children, so, you know, he's very comfortable. They're all very used to Cam, which I think, you know, obviously plays a big part because, you know, I've gotten better at this. But, you know, unfortunately, I think we do fall into this, you know, sort of the same thing about, you know, you were saying before just kind of habitual things. I mean, apologizing, you know, and now at this stage, we, you know, that's long past. I mean, even from the beginning. And I mean, it's funny because now that seems so long ago. But in my mind, like, he was great. I mean, I can't really pinpoint anything you struggled with as he gets older. Last year he was definitely starting to have a harder time. You know, probably some hormones. And Cam does have some language. So being able to ask for something and not getting it is a completely strange thing to put your mind into. Because for him everything is literal. If he's asking for it, you know, why can't I have a sprite at 8am it doesn't make any sense to him that, like, well, it's not healthy, you know. Well, that means nothing. You know, it's like it's here. I can get it. I can open it. I don't even need any help. Why can't I have it?
• 21:34
  Speaker B: I had a cute little blonde boy bringing me a bag of pirates booty at 5:30 this morning.
• 21:38
  Speaker A: There you go. Right? Like it's like, it's available.
• 21:41
  Speaker B: Like, Buddy, you had a 2A double stack cheeseburger at 7:30 last night. There's no need, like zero need for Pirates Booty right now. And he's like, he's like.
• 21:53
  Speaker A: Because it's there.
• 21:54
  Speaker B: Pirates booty? Yeah.
• 21:56
  Speaker A: Like that's something about autism that, you know, I, I was informed about, but until I started living it, you know, I couldn't really. I mean, and my gosh. And he is like, you know, in that line in Ferris Bueller, I mean, he will just, he will not stop asking. I mean, it is just, you know, because again, it's like, what do you mean?
• 22:13
  Speaker B: There's no downside, there's no downside to that.
• 22:15
  Speaker A: No. So we, we did have some, you know, kind of more. I mean, I hate to use the word meltdown. I guess that's what it is. Um, but yeah, I gotta give him credit, man. He really works through it. I mean, there was one point, you know, early on in this trip last year, we were stopping in Michigan to visit another friend from high school. And of course, you know, it's always when it's somebody you haven't seen in, you know, 10 years, meeting your child, that's five, thinking like, why are you bringing this kid on this? You know, whatever it was last year, you know, 14 or 15 day road trip, you know, he seems like, you know, and that moment in time, you know, I called Mike. I'm like, you might have to like fly out here to meet us. You know, I don't know if we're gonna be able to do this. The next day was fine and he was happy as a clam for the next 13 days. But, you know, it's like I'm always aware of that, as I know you are too. It's like we're, you know, I mean, if something is making Cam very uncomfortable, we're not doing it, you know, but he normally does adjust pretty well. And I don't know why that is. I don't know if it's just his natural personality. I don't know if it's exposure, if it's a combination of both.
• 23:16
  Speaker B: Yeah.
• 23:16
  Speaker A: So we kind of roll with that.
• 23:18
  Speaker B: But I think that about, you know, what is, what is there? You know, you get this diagnosis, right? And all of a sudden your kid is autistic. You got this autistic child and, you know, and with Milliam Mac, it's like full body apraxia, right? Like they're, they have. They are so unaware of their body in space, like in any sort of space. And it leads. It's like the fourth. It's like, you know, that is like the descriptive factors of them. And then when they do something like they are, you know, mobile or they are adaptable or adapt quickly to travel or something, or in a hotel room or whatever, or flight or something. And I think maybe if I didn't lead so much with autism and apraxia, and maybe he's just being an 8 year old little boy, maybe that's just. Maybe, maybe. I mean, I know it's laced and I know it's like, you know, complex, but sometimes I have to really stop and go, good on you, buddy. Like that. Yeah, you're, you're just being an 8 year old little boy who wants me to, you know, here. Maybe you're not eloping and you're not just having this autistic, you know, lack of, you know, you know, no impeding danger ever. And maybe when you're running out of the bus and I have to chase you down the street, maybe you're just being Milly And I think sometimes like that it becomes a lesson for me now versus what was not. I was so not in the space to be able to think about that early on, but now I am. Maybe Milly just an 11 year old and she's the middle kid and she is really annoyed with everyone. Like she's such a little kid sometimes. And I'm like, yeah, she's an older sister, younger brother and she's smacked up in the middle and she like looks at you like, get out and, and you know, being a little one, like he knows he's the baby. So I, you know, I wonder like with you sharing about Cam and the travel and all these things, like maybe sometimes it's just. Yeah, he's an 11 year old little boy who, you know, there's a lot going on and he has to re. Acclimate to something and you're there, you're, you're his, you're his, you know, ground zero. And if mom's good, I guess I'm gonna be good too.
• 25:24
  Speaker A: That said. Yeah, yeah. Two things can be true. You know, that's, it's funny. Cause it's another thing I say all the time as the years roll on. Absolutely. I mean, you know, it's even interesting like, you know, he's getting better at kind of like identifying some emotions and things. And you know, there'll be times where, you know, especially if it's work. Right. Like he' struggles very much to do any sort of schoolwork, you know, things like that. And I'll be like, well, you know, is this like really hard right now or do you, or do you just feel kind of lazy? And he'll be like, lazy? I'm like, all right, well, you know, that's, that's a reasonable, like, you know, you're allowed to also just sometimes not want to do it.
• 25:56
  Speaker B: Yeah. And I think that, you know, it doesn't have to be a diagnosis of like, you know, demand avoidance or something. It's just sort of part of the like. My favorite, my friend and fellow advocate, Lori Dove, she does everyday autism essentials and she's like the queen, I think, of regulation to talk and she's always like, name it to tame it. If. If my daughter can just name what she's feeling, it actually just disperses it and we just keep going. So you're kind of illuminating that a lot because if he's. If Cam is able. If you say, what are you feeling? Is it this or this? He can say it. All right, keep moving. That makes sense. I totally get it. And you know, in the non verbal world, I think I'm. I'm obviously guessing, but I've. I have a better, you know, my. My correct. Like, my. My rate of accuracy is probably pretty high. That, like, when Mac is melting down and I go, this is really hard, isn't it? I know that you absolutely hate putting your pull up on, but when I see you running outside and how fast you get to the trampoline and like, the agility to like, not to like, jump over, like the dog Mac, I know that when you want to do something, you can do it. So this is so I. So I think it's. It has less to do about even their ability to be verbal and to be the mom that can just talk through it and to name it. And as Lori said, Dove says, name it to tame it, which I love.
• 27:09
  Speaker A: Yeah, no, that's so true. Well, you know, and even with the language, I mean, there are still plenty of times where, you know, Cam is just repeating something. So it's like, is it even. Can I put a lot of stock in it? You know, I mean, as the years are moving on, maybe a little bit more. But yeah, I mean, there's sometimes. I mean, it's hysterical because even, like, he had his field trip on Wednesday and his teacher's like, you know, now at the end of the year, he'll say her name, but for the longest time, he would just call her like, Ms. A because it was another adult in the room. And it would be like, please leave me alone. Like I'm gonna say this. So then you just stop asking me, because I just like, Let me just give you an answer. Like what? He, you know, was maybe five or six. I was getting a little bit more of this. He would just say, Cam for everything. He'd be like, cam, how are you, Cam? I'm like, okay, well, yes, that's. That's, you know, so. I mean, there's a lot of layers to that, of course.
• 27:53
  Speaker B: But yeah, I think again, there's. There's. At the end of the day, this is such. We are. We are in a human experience. Our children are. I always say, I'VE got three happy and healthy children, too, just happen to have autism and apraxia. And I think you, you live that so much. And I'm, I'm so. I'm so honored to always take in how you're living because that, I think it, it helps me feel more confident about how I am as a mother, too. And even though our kids are wildly different and present differently, knowing that there's people and moms out there who, you know, aren't white knuckling this and are taking it in stride and to be able to be present to what happens on any given day, whether it's. Yeah, they're showing you. I always say that they're continuing to show us who they are every single day. And that's one of the reasons why I wanted to have you on here to share more your story. And I'm just so thankful for that. If there's one thing before we go that you would tell moms that are earlier on in this journey, what would it be?
• 28:50
  Speaker A: Gosh, you know, that's. I probably should have thought about that. I think that, you know, I don't want to say something like, it's going to be better than you thought it would, even though that is true, because, you know, I know that every experience. Experience is so unique, and I realize that's not always the case, but I think what you were talking about, you know, and, like, finding out who your kids are and, you know, I read something years ago that always stuck with me where it was like, you know, I was parenting the diagnosis more than I'm parenting the child. And of course, yeah, I mean, being autistic is a huge part of who Cam is. I mean, right? It's like I can't take my eyes off my almost 11 year old for a minute or he'll be wandering out into traffic. I mean, it's not something that, you know, I can put him to bed at night. You know, there's always one eye open. It's, you know, never not on my mind. However, like, yeah, he is still this whole person that has interests and likes and dislikes, and he is funny. I mean, it's like the things that he comes out with when he's really able to, like, focus on what's going on. I mean, you know, this morning we were getting ready and he's bouncing on his ball over there, looking at his iPad and he, you know, gets dressed and it's like, all right, bud, we gotta get out for school. And he's like, I get 10 more minutes. Cause he's, you know, this is something I say all the time and I'm like, well, no you don't, because then we're going to be 10 minutes late. But like the things he remembers and then, you know, it's amazing, you know, because. Yeah, so much more is in his mind than I ever would have known. And that probably is the biggest thing because it's so easy to just, you know, to, to shut down and to be constantly, to your point, white knuckling it. Because yeah, this is, this is hard. I mean, it's stressful. I mean, I've, you know, probably had anxiety since I was three. And certainly it has not improved.
• 30:32
  Speaker B: Not the anti anxiety pill or journey, I'll tell you that much.
• 30:36
  Speaker A: No, I mean, because it's always there, right? It's environmental.
• 30:39
  Speaker B: Yeah, but you're right though. And I think it's a. Because, and this is a beautiful way to put it, like you said, these children have full inner lives just like anyone. Like I, I can know you and talk to you a number of times a year. I truly don't know what it's like to be in the inner, in the inner world of Nora, just like you can't with me. And I think that giving that our children the benefit of the doubt too, we never really truly know we can have a solid guess as their parent and mother and caregiver. But the end of the day, I think that, yeah, to not just parent the diagnosis, to parent that full child. And I think that I hope that anyone that's again, earlier on in this journey with the grief and the acceptance and that whole nonlinear timeline that if you can go back to just knowing that you got this beautiful soul in front of you and you get to do it, it's going to be, it's going to take you farther and much more peacefully than you realize.
• 31:32
  Speaker A: Yeah, that's a good word. We're all looking for peace, you know, the end of the day, that's the main goal for everything.
• 31:38
  Speaker B: I mean, purchase it. You can't purchase it. You're going to live it.
• 31:41
  Speaker A: Nope.
• 31:42
  Speaker B: Laura, thank you so much for sharing on inches today. I, you know, so, so honored to like decades into friendship. Never, never in a million years, so many years ago, knowing that we be on this and standing shoulder to shoulder like this, but here we are and we get to do it. And I'm so thankful for my listeners, my community here listening to hear more about you being Cam's mom.
• 32:02
  Speaker A: Yeah, thanks for having me. This was fun.
• 32:04
  Speaker B: All right, everyone. Well, until next time here. Thanks for listening in here on the Instance podcast.