From Diagnosis to Understanding: Parenting a Neurodivergent Child

In this episode of the podcast, Jacqueline and her husband discuss their personal experiences with their oldest son, who has been diagnosed with autism and ADHD. Recorded in the comfort of their family room, they share insights into their journey of understanding their son's neurological differences, highlighting the challenges and triumphs they face as a family. The couple reflects on the initial emotional responses to the diagnosis, the significance of early intervention and therapy, and their ongoing efforts to adapt and provide support tailored to their son's needs. The episode sets the stage for an upcoming discussion with Kari Baker, founder of Kind Families, for further exploration into neurodivergence in children. This intimate conversation offers a window into the daily lives of parents navigating the complexities of raising a child with invisible neurological differences.

Disclaimer: the first half of this episode unfortunately has some audio quality issues thanks to a very tired mom and a mishap with technology... IYKYK.

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A PARENT'S GUIDE TO AUTISM

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Transcript

Hey friend, welcome to a new episode of the podcast. If you follow along on Instagram at motherhood underscore intended, you'll see that I've been sharing some video of the episodes that I've recorded. So today's episode is coming at you from our living room.  , but today on the podcast, I have my husband here with me, to cover a topic that's been on our hearts and our minds and our family lately.

So yeah, we were in a makeshift podcast studio today. Kids are at school, boys are at school, Lorelai's taking her nap. We have like a solid 30 minutes to record. So, what better time than the present, you know? 

Well, time is, uh, time is hard for us. 

Yeah, few and far between, moments alone. Um, and usually, we try and do things like this when the kids go to bed, but 

No shot.

Just so tired. 

The days go by way too fast. 

They really do. I mean, the things that I, in my brain, think I'm going to do after 8pm and what I actually end up doing. 

I know. We always have these big, big plans. When the kids go to bed, we're going to straighten this room. When the kids go to bed, we're going to get down in our basement. Looks like a bomb went off. 

 Declutter. 

And then when we finally go to bed, it's literally like, yeah, I can wait. 

Or we could just watch TV. 

Yeah.  Um, and when you're out of town, I, my thoughts in my head are usually like, Oh my gosh, this is my time. I'm just, I'll just work. I'll just work. I'll get things done. I'll just start a new business. Whatever. I just like, I have all these aspirations for the nighttime alone time. And then I just, yeah. Uh, which is needed too. We need to 

do nothing sometimes isn't a bad choice. 

Yeah. You know me, like the last two days it's been like,  done a lot of nothing the last couple days and I think it's because I haven't taken that time to do nothing. I've just been going, going, going for two weeks. 

This house is a mess. 

It's It's Yeah. 

I'm just joshing. 

What an experiment though for what happens when I do nothing for two days. 

Well, I Oh, yeah. I mean, I cleaned up a little bit. 

You had to, cause I didn't.  Um, anyway, so today on the podcast,  the topic we're covering is. autism and ADHD. And I wanted to record an episode of my husband and I together talking about our personal experiences with this, because next week on the podcast, I'm welcoming on Kari Baker, who is the founder of Kind Families. which is all about kids with invisible neurological differences. So, ADD, ADHD, OCD, autism.

It's a really great community that I was introduced to and she has so much knowledge on the topic as her son has autism and ADHD, he's 13 now, but she tells her story and why she started her company. She wrote a book, but we also connect on a personal level on this topic.

So, um, it's something that I haven't talked about openly yet, mostly because my husband and I have just kind of been navigating the world of neurodivergence and just, Beginning to learn and explore our feelings with it.  

Yeah. And digesting, right. It's a lot. And, um,  you know, as someone a young age who was diagnosed with ADHD and ADD,  you know. Not to go off on a tangent, but again, like I was, you know, I was put on Ritalin at a very young age. And I think, you know, no offense to my parents, but the eighties and nineties, right, they were like,  all right, you know, you're, you're bouncing off the walls, he's not listening, he's doing this. And, you know, I wasn't a bad kid. I say this all the time. I just did stupid things, right? Like I wasn't completely a degenerate. I just did. Dumb things and so 

well, and that's your phrase that you've used for years and I guarantee as we like just dive into these different diagnosis more for our own kids. I feel like you'll learn more about yourself too in ADHD. I know I have just from the little reading that I've done. 

Right. And you know, before we really dive in, I mean, my, my biggest, and I've told you this before too, is, is, you know, it's like, everyone's quick to diagnose and everyone's quick to see, Oh, what kind of medication can we put them on?

And, you know, I know for me growing up, Ritalin, yes, it definitely calmed me down, but then there was other side effects. Like I wouldn't eat. Right. And so if I had Ritalin, I. Would never eat lunch or I'd never, you know, it, it made me, I noticed the difference. I wasn't like this happy go lucky Josh, you know, I'd just be like,

 Yeah. Which is like, not what we want either. And we've always been that way from the start. You know, our boys have been in occupational therapy for over a year and a half now. And Hunter, of course, being premature and born at 24 weeks has started his life in like a bunch of different therapies, speech therapy, occupational therapy, physical therapy.

Um, he was followed by early intervention and, you know, he just hit all of his markers.  In those first three years,  yeah. And it was just a different time, right? You know, a one year old, two year old, three year old, they're looking at different things. , if anything, he's always been very advanced in like his verbal communication and he just has, yeah, he has like so many really amazing skills that like, And again, being our first child, I didn't even know it at the time.

I was just like, Oh, he's talking and he's writing and he's saying all these things like so quickly. It wasn't until like the years went on and I met other toddlers and I was like, Oh, I think he's a little advanced. Yeah. So this conversation came up, Let's see. Like I mentioned, our kids have been in occupational therapy for the last year and a half.

For different reasons. With Hunter, it started off with, we suspected,  some ADD or ADHD. Again, we didn't really want to put a label on it, but as he got older and,  we kind of expected him to be able to do certain, Certain tasks. Certain tasks, yeah. Like the mornings were really, really difficult for us.

Very challenging. 

He had a hard time going from point A to point B without making like a million stops in the middle. Um, you know, we would say, all right, here are your clothes, put your clothes on. They'd be right on his bed. And 15 minutes later, you know, you'd have one sock on and he'd be like doing something else.

And it was hard because I felt we were getting frustrated, obviously, because,  he started kindergarten. We were getting out the door for school, even if it's just preschool. We have  places to go and have to be on time, which I already suck at in general. 

You know, then it's, you find yourself using phrases like, you know, Hunter, why can't you do this? Or Hunter? It's simple. 

You're five now. You should be able to do X, Y, and Z. And like, again, these were phrases that we used. We knew we heard ourselves doing it and like it it didn't feel good at first, you know We're constantly nitpicking and it got to the point where we realized like he's not just trying to be like disobedient Or like goofing around he genuinely cannot focus To,  do this sequence of tasks. 

And so that's where we started with Hunter,  with occupational therapy, which has helped a lot. We had some other concerns too, with just like some sensory things.  Over the years we've watched him, he kind of puts his hands over his ears. And our family members have mentioned it too. And at first it was like, is that a sound issue?

Yeah. We would just kind of write it off as well. I mean, if we're in a movie theater, well, it's loud. Or if there's a lot of noise going on, well, it's loud. I mean, I get that. 

Well, then after a while he would do it, not even for volume. Like it would, you'd notice he mostly covers his ears when he is worried about something anxious. You know, he'll be watching a show and like. Not a scary show, like something very lighthearted, but he just feels so deeply. He's so empathetic. 

Like for example, we were watching the movie Jack,  Robin Williams. Great film.  

On accident. Like we put it on, cause it was like family friendly, not thinking they were going to watch it and they both got zoned into it.

And I mean, you know, there's scenes in the movie where, you know, Jack's getting made fun of and, you know, And then, I mean, you could just see Hunter, and to your point, yeah, where you just feel so  Sympathetic for that character and what he's experienced in that moment. And he even said those, he's like, I don't like this.

And he gets super overwhelmed with those emotions because he like, he does, he feels so deeply, which is one of his best characteristics,  but also it's really hard for him. And so he'll cover his ears or literally now he'll leave the room, he'll just leave the room and go do something else if he, if a show is too much, 

on the flip side. Our younger son Noah started occupational therapy for some sensory issues, we had a hard time for example when he was three, I think maybe two. I don't know.  He's always had an issue with different fabrics, like nothing could have zippers or buttons or hoods 

Tags 

tags were a hard one.  And at first even shoes he had a hard time with shoes and coats I think it was all his like year Three of being three that like all winter he would not put on a coat  he did not go play in the snow that year because there's no way he would put on all the gear 

Like a snowsuit the gloves and the hat.

Yeah, and like honestly, it We didn't have the knowledge that we do now about, I didn't know anything about sensory processing or any of that, and he was a toddler, and he was three, and he was already kind of like, sassy about most things, as most three year olds are, so we're like, ugh, he just, you know, toddlers make no sense, they'll be like, I want ice, but I don't want it cold, you know, like, they say the silliest things.

And you know, and I don't know about you, but I kind of chalked that up, that period up to, well, that was during COVID.  Yeah, so it's like no one really went anywhere so there was really no need for a jacket or anything like that Yes, we want to get him outside play, but I just chalked it up. He wasn't he wasn't going anywhere for a year So maybe wearing a jacket or

it's like the least of our worries at that. I didn't overthink it as much. Yeah for sure Well, the other thing is, at least on my brain was like, because of COVID and, you know, he was born November, 2019. So he was an infant when everything shut down and didn't really, as most COVID babies didn't know anything else other than like our home for the longest time.

Here's your space. 

Yeah. And so,  he had a hard time in new situations too, you know, going into his very first little, like toddler preschool class and,  Even with our family members, you know, 

meeting anyone new on his own, 

like Papa and uncles and stuff.  He would just shut down and have a really, really hard time. And again, a couple of things are on my mind at that point. You know, I was like, again, COVID not, not socialized , as most kids might be.  But also I'm like, he's just shy. He's not Hunter, Hunter's the opposite. Hunter, almost to a fault at this point, which  will lead us to one of our biggest concerns about following through with an evaluation is Hunter has no fear of anyone, you know, he will hug a stranger. He will talk to absolutely anybody,  which for the longest time was such a cute quality and it's still a good quality. Anybody. Teaching him boundaries now has been difficult. 

Yeah, and it's, you know, as he grows older, and not to go completely off path, but you know, a lot of people have good intentions, but there's also people who don't have good intentions.

And,  he doesn't know that boundary of someone who's being genuine versus someone who They have, you know, malicious, uh, 

yeah, and I know you're referring to adults, but I'm thinking like, even as he goes through school, like kids, you know, he doesn't really understand quite yet that like, or maybe he never will.

I don't know. Like he's everyone's his friend.  Everybody is his best friend. Um, and he doesn't pick up on the normal social cues that other kids might.  I mean, kids, kids can be mean.   But  to backtrack, didn't know anything about the sensory, anything, and then with Noah, it, it was a sound thing.

He started putting his hands on his ears too, and he would get really upset or overwhelmed in certain situations. At the time it was hard to tell if it was just like an age thing, or if it was just his personality, or if it was a real,  issue for him.  When he had his birthday at Chucky cheese, which like fair Chucky is scary to some kids, you know,  would not go over there at all.

Also, when we sung happy birthday to him for like his first, second, third birthdays, he just covered his ears and like literally hated every second of it. It wasn't until he was a little bit older to verbalize at his fourth birthday. And we knew by this, but like, no one does not like to be sung too. 

And if you do, it has to be quiet. He doesn't, 

he doesn't want it to be loud. And also he doesn't like being singled out. Like he doesn't want the spotlight on him. which  I think that or just his personality, that's very common for a lot of people. But the noise level of a whole group of people saying happy birthday to him is really bothersome.

So, I think at his fourth birthday, when we had some family over for dinner, we just said one, two, three, happy birthday.  Or like said it quickly or sung a different song. I don't know what we did, but, um, we know more now. Um, and he's worked a lot with his occupational therapist over the last year, even with some food things because he has a lot of, you know, it's not just his clothing. He has like some sensory things with textures of food and. Always thought he was just like a picky eater. 

Yeah, he's basically going to turn into a chicken nugget.  

Yeah, which again, a lot of kids are at that age. But the way he spits food out or like can't have it touch his tongue in a certain way, you know, it's, it's more than that.

So that's why, both of our kids have been in therapy and it's been super helpful and they've come a really long way. And if anything, I'm really proud of them both because they can verbalize, especially Noah now. Yeah. What is bothering him? I don't like this zipper or this is bothering me or can I do this a different way?

Well, I mean for example this morning I was getting them dressed and I put on a pair of jeans for him and he was like these are just too tight Fair enough. Yeah, and then we just ended up switching pants and then you know, I was asking about a sweatshirt So it's cold outside and he's like well I think it's far sure to be better.

And then, you know, I took off his long sleeve shirt and put on a short sleeve shirt and he's like, why are you doing that? And I was like, well, you don't want long sleeve, long sleeve. I want to be comfortable. And he's like,  yeah, that makes sense. Yeah. You know, which is super cute. And to your point, it's cool how he can take that information, absorb it and be like, yeah, it doesn't make sense.

Yeah. And he's like, overly smart too. I mean, like it's crazy how smart our boys are. 

At four I was,  I don't even know what I was doing at four. I wasn't doing math. 

Not doing what they were doing. 

Yeah. Um, yeah. And you know, we still have a lot of working with him and we're still learning. I mean, The amount of meltdowns he's had over brushing his teeth because either the flavor of the toothpaste was off or Something just wasn't quite right.

You know, we've been late to school a lot over that. But all of this to say it was Hunter's occupational therapist that suggested, you know, they do evaluations every six months and she did say that she sees signs of ADHD and I was a little nervous with him going into school, which is why I just wanted him to work with an occupational therapist and work on some of these things and just kind of figure out if he did need help in some areas before going to school full time. So she worked with him and yes, did, you know, give us some tools to, help him with his ADHD As it relates to everyday tasks and, what he might experience in school.

And Hunter did really well in his first year of school in kindergarten. I mean, the academic part, he. Did well and I think there's a lot of kindergartners who just can't sit still for that long I mean, it's an adjustment going from a couple days a week to preschool to all day full day kindergarten  But then Hunter had some hard times in those first few months where you know He would shut down over a situation that didn't go his way And, you know, one time he, I forget what the scenario was, but he went into like they had a little play tent in the classroom and he went into the play tent and would not come out, like would not come out when the teacher asked him to. 

There was another time that he, again, now knowing a lot more, I think he was, you know, Overstimulated or understimulated or something, but rolled himself up in the carpet of the classroom after, after something, I think he was told not to do something or it's time to move on to something else.  Had a hard time with transitions in those first few months.

And. It was really stressful because I was getting calls from the school like every other week in those first couple months of kindergarten and  They'd have to call in the social worker and you know He spent time with a lot of the personnel at his school Which very lucky to go be at a school that has so many resources I didn't even know they had a sensory room, but I took him to the sensory room a couple times so he can kind of Reset and join the class again but after those few months, like he really just adjusted to the class, and I think he found everything that they were doing really simple.

And like I said, in kindergarten, I think a lot of kids were very antsy and not wanting to sit still for that long. So I think, you know, the curriculum was a lot faster. They were just switching what they were working on and everything. Um, so we didn't think anything of it. We thought, you know, he really just like adjusted.

And come his next evaluation with his occupational therapist, it was then that she suggested getting him evaluated by a psychologist because she did think ADHD. And I just had some other concerns after that behavior. And he had to be six in order to be evaluated. So while in those first few months of kindergarten, I reached out for additional resources. Um, we had to wait essentially until March when he turned six. 

And then when I think we got there in May, 

yeah, it was May. It was like the earliest appointment we could get. and that evaluation and all of this was really because I started dabbling into researching about like IEPs and things like that. And really, we just wanted to make sure that he had whatever he needed to succeed in school going forward, knowing that the curriculum is going to get harder.

It's going to get harder. And not only that, you know, time, you know, if he has a task where it's timed. That's a trigger for him, 

and we learned that quite simply by doing things at home, like, okay, like 10 minutes to clean up your toys or 10 minutes. Yeah. Left on your tablet. Like he would just panic and literally freak out.

I mean, I think all of it is, is, is setting him off for success. And I think that was like the big driving force behind getting him evaluated a. So we can learn and figure out how to speak to him in a manner where it's not like, Hunter, you're not doing this, Hunter, you're not doing that, you know, where it feels like every time he turns around and I'm probably more guilty of it than you are, where it's just like, and I can't.

I can't do one thing right, and I don't want him walking through life, especially at this age, thinking like everything he does is like,  nah, I probably should have done something else. 

You're right. And we both were feeling that way. We were like, I'm tired of nagging at Hunter, and you know, I, you know, like when it's starting to feel like they're, they're not trying to do this on purpose.

Like they just genuinely can't do some of the tasks or listen to us, respond in the way that we, uh, Um, yeah. So by the time we finally got this evaluation, it was really intense. I mean, I took them cause you stayed back with Noah. Oh no, we had Lorelai, too. That's right, we literally had a one month old. 

That was wild. Um, well, just a little bit going on. 

Wonderful, though. She slept, I don't know, 23 hours. Yeah, unless you didn't sleep. That was easy peasy. It was more or less keeping Noah entertained. 

That's true.  So you stayed back with them and I took Hunter to this appointment because it wasn't just like an appointment It was like a whole day thing.

It was like a lunch. It was like a six hour situation Which I already had concerns about like, how is this gonna go? I mean, that's just a long time But yeah, I started with they had me fill out  Well, a big long questionnaire like to the point where I was I think I started overthinking things but also with the questions I was reading I was Genuinely like oh, yeah, he does do that or that's exactly what he does.

You know, I've never seen it written on paper I thought it was just us in our life. So I was already feeling like  Well, like I think they get what's going on I don't know what this means, but I think they get what's what we might be experiencing with Hunter and his you know behaviors and everything But yeah, so it started with me and then the written thing and then they asked me questions and then Hunter had different tasks that they, they did, you know, different tests and different activities and very comprehensive evaluation.

They did have to skip the part. There was a one activity that was a timed situation and he genuinely said, because he's so smart and like able to communicate so well, he was like, I can't do this. This is stressing me  and And they didn't make him. They were like, okay, I think like that speaks volumes in itself.

There was another point in time where he shut down completely because he didn't think that he was doing the exercise. I guess perfectly or to his standards,  which is, has been a reoccurring theme too, even in his first year of kindergarten, you know, they were like, He would cut something not perfect and want to scrap the whole project and start over 

Which you know if he's painting, you know, if he's painting our house, I'd love that 

Sure. Yeah, I mean I can relate. I mean, I'm a slight perfectionist. 

Yeah, not me. I'm like, it'll do  

but it was an issue in school because like he would not be able to keep up with what they were doing and finally the teacher had to be like Hunter, we don't have supplies to keep starting over. Like, you're doing great, or we can do it differently.

Um, and that came up at OT too, when they'd be doing different exercises. You know, he would just like If it didn't go the way he wanted it to or perfectly, he would just shut down and that's what happened in the evaluation. So for a while there, we thought we were gonna have to reschedule, which I was like, I can't do  this again.

It took so long, especially with like, yeah, Newborn and then Noah too. I was like, how am I gonna schedule this again? But he was on the ground and he was crying and we tried to, I tried to get him to go for a walk. We took a snap break. Finally, they had him just playing with Legos and he came around to it, but it was a good like 40 minutes of seeing like if we could come back to the.

All right. And that's also, I mean, both boys are, the more you tell them to do something, like when they're in that state, the more like, Oh, come on, you know, or this or that, the more they're going to shut down. Um, and.  You know, we've been in situations out in public, we've been in situations when they're Ninja Warrior where it's like,  I guess it's hard for us as parents to articulate that to like,  essentially a stranger, to be like, don't do that, because.

Well, on the same token, I think now that we know, and I'm going to be more conscious of that, like, if we're in that situation again, just to be like, look, you know, pull, pull that person aside and say, you just got to leave them, let them have their moment, as long as it's not hurting themselves or anyone else, just let them,

well, I think the other thing too, and this is the whole reason why, Getting evaluated and learning more about different diagnosis is that like we can advocate for our kids , like you said they both get in that situation where they can shut down It's happened multiple times with Hunter You know He missed a goal at soccer practice last year and laid down in the middle of the field and would not get up like  He was in the middle of practice and you know, I have coaches looking at me like Do you know what to do?

And, and like, there's been a lot of times you know, at an eye doctor appointment and he shuts down, like, what do you usually do in this situation? And I'm like, I don't know.  Cause these Yeah. In these situations that have just been coming up in the last year, because, you know, we're past COVID they're in a lot more social settings with sports and activities and play and things like that, that it is kind of new to us.

But the whole point is that we have these tools to support them. So long story short, the evaluation was very intense. We had a follow up call afterwards, and we were given a whole report of, you know, how he did on different areas, and what they observed, and talking to him, and so on.

Essentially spending the day with him. We had a call with the psychiatrist, which was really helpful to really talk it through, not just reading statistics and like getting a label, but literally talking to the person who spent a day with him, took our input into consideration. Also took the input of his OT and, you know, we got the school involved then.

And, it really became like this collaborative effort. But his diagnosis, they said was autism. Level one. And I didn't know what that meant at the time. There are like a few different levels of autism and it's, it's all autism spectrum disorder. Um, and that's exactly what it is. It's a spectrum. So someone who is level one might be somebody who you don't, you see walking down the street and would have no idea that they're on the spectrum.

Someone who's a level, and I forget if it's three or four, but say a level three,  I think there's three levels, might be somebody who needs assistance to do everyday tasks, and someone in the middle. So again, don't quote me on any of this. We are just, you know, we finally, I think when we got that report and talked to the doctor, it was June.

And then summer was again, had a newborn  summer. We just enjoyed with the kids and yeah, now we're really, we're really diving into this more. So along with, the autism diagnosis was also ADHD, which we've had kind of assumed all along.

Yeah. They, uh, they definitely take after their father and that,  you know, like I said, 

and the more research I'm doing, it is hereditary or can be, 

and you know, again, growing up with ADHD.  It's one of those things where it's funny. I'm like, man, I'm like, I bet I drew up my parents up a fricking wall. And it wasn't like I was bad, you know, I wasn't intentionally trying to be bad. It's just I needed.  Extra help.  

Yeah, I mean, 35 years ago was a very different time, and they did not have 

Don't age me. 

Well, I 35 years ago. Assuming you were like 6.

 Yeah.

 I was not gonna say your age. I was at least trying to let people do their own math. 

Hurts, man.  

Anyway, they didn't have, obviously, the knowledge that they do now about neurological differences and all of these things, so.  It's unfortunate because I, over the years before I even knew any of this, I mean, obviously you've told me stories about like, like with the Ritalin and just like your behavior in school and everything. And again, you're not trying to be bad. It's who you are. It's how your brain works. It's all just a different way of someone's brain working.

And I'm not, this is, there's like a few moments in my life, you know, growing up and then like being in school that I'm like, I remember, and I remember in fourth grade,  our desks were like in, Square shapes. And of course my desk is right next to the teacher, you know, and I get done, you know, doing whatever reading, writing, whatever.

And,  then my attention is completely like, you know, squirrel and she'd be like, Josh, did you take your medicine today?  You know? And I'd be like,  yeah. Right. And, um, I remember being like, you know, damn, I don't know. Maybe I didn't.  You know, and then she's like, I think you need to go see the nurse. And I'd be like, you know, 

and as a kid, obviously that stuck with you. 

And it's like, at the time, like, it wasn't, it didn't hurt my feelings. Like, I didn't feel like singled out at that particular time. And now looking back, I was like, yeah, woman, you could have pulled me aside or been like, Hey, you know, but yeah, 

different, different times for sure.

And that's, you know, again, that's why I keep on saying it. It's like, back then, Brinlin was like, Okay, cool. Your kid's hyper? Put them on this shit, it'll calm them down.

And  ADHD presents itself differently in different people, and even like, boys versus girls and  not just like, being hyper, you know?

There's the whole focus part of it, which  you could have been trying your absolute best in school, but we're not giving the tools to you. To truly succeed at your highest level because things might have to be done differently. Maybe you needed more time on a test because your focus wasn't there or maybe, you know, you need a little lax with homework because you might forget, you know, like, and I'm just speaking in general.

I have no idea how you are. I'm just talking about the things I think about, you know, with our boys going forward and Hunter. It's like I want to make sure that he's given every opportunity to do his best work. And that's not going to look the same for everyone. And we're really lucky to be at a school district in the community that knows that and supports that.

And I think, a lot of people are just obviously more aware now.

Okay, so remember when we said we only had 30 minutes to record this? Um, that's true. We had to, we had to cut this off, put it on pause. Uh, Josh had to go pick up Noah from preschool. He is now, he got a snack, he's upstairs watching his show for a little bit so we can finish recording. Um, I should have known that we were going to go over 30 minutes because 

We like to banter.

We do, and I'm long winded in general, so. You know, usually I let my guests do the talking, but you're my husband and I just like to talk.  Um, so for those of you who are watching any part of this video ever, if it ever hits the interwebs, because I'm not looking, not looking the best in the comfies today, no makeup, no makeup Tuesday. But if you're a sleuth and watching stuff, we did have coffees and now we have seltzer waters.  

Too early to crack a beer. 

It is. It's, it's too early. And we have soccer practice and another school pickup amongst all the things. So here we are with our sparkling water. Okay, so we're back And I want to focus  on Hunter's actual diagnosis, because it crossed my mind to  record this today, not only for our own sake, because We've never talked about this openly, um, not even really with our whole family or friends yet.

You know, we had a lot of mixed emotions around this diagnosis and while we've always had certain statistics in the back of our brain when it comes to Hunter, given the fact that he was born at 24 weeks, he was only two pounds, one ounce, um, so low birth weight. There's so many risks with that. Even though for a 24 week or two pounds, one ounce was, we were told was like huge.

Yeah. Yeah. Um, But there's just so many risks with that and, you know, we've been told and over the years we're just like, wow, he literally has defied all odds of all of these things, you know, the biggest one being he only had a 50 percent chance to even survive the NICU. So we've always been. amazed by Hunter. But  to go back to Hunter's initial diagnosis of autism and ADHD, I want to talk about just our feelings when that happened, because for those listening, you, maybe you've been in a similar space and you're, maybe you're navigating this now, a diagnosis with your child,  or maybe you are listening to us and kind of realizing like, wow,  my son or daughter has some similar characteristics and similar qualities. 

I've been wanting to look into this further, um, we're just gonna openly share our feelings about this experience. We don't know everything, I'm just gonna say that. We don't know everything about autism, about ADHD. I'm still learning the terminology and what to say, so don't come at me if I phrase something wrong or not, like, politically correct because I am.

Genuinely still learning and the biggest thing is we have not actually had this conversation yet with Hunter because we are still navigating How to tell him when to tell him what's age appropriate But we do want him to feel empowered with knowing that there's nothing wrong with him and his brain just works differently So we'll keep you updated as we navigate that but you know, we haven't spoken to him about this yet how did you feel when we first, when you first heard about,  heard the word autism? 

Um, I mean, I think my initial reaction was, I guess I could see it, but like, again, without fully understanding what that actually meant. Um, mean, I wasn't upset about it. I wasn't, um, I guess for me, the biggest thing was like, okay,  now there's, there's an answer, right? There's a kind of why behind the what, and you know, knowing now and, and seeing his personality traits and it kinda,  it all makes sense. Again, it doesn't change who he is, doesn't change. you know, the way we feel, I think the biggest eye opening for us is, is learning how to adapt and learning to speak to him in a way that makes sense to him, you know, to go back to what I was saying, it's not so much as like harping or, you know, Hunter, you're not doing this or Hunter, you're not doing that.

And now it's being able to articulate that in a different manner to where, you know, When we are talking to him, or we do want him to do something, it's not, you know, where he feels like it's a constant, like, harp, or a constant, like, Oh, Haunter, uh, you know, 

Yeah, I think I was, it's been about like four or five months since we found out and my feelings are definitely different now than my initial reaction. I was kind of in the same boat, like my initial reaction was like, okay, like I was almost kind of like defensive. I was like, well, This changes nothing, he's who he's always been, um, it's just good to have on the back burner, you know, good to know, um, and  if anything it'll just give us tools to help him further and, you know, we don't need to tell anybody about it, was how I felt.

Well, I think that too, I'm starting to interrupt, I guess that was like, that was like my first, I was like, no one needs to know this. You know, no one needs, it doesn't change who he is.  No one needs to know about it. 

And  I think like it was because when you hear it, it just feels like you're just slapping a label on somebody. And I know obviously we just love him so much and we were both coming from fear. I know I was like, 

I think it was all, it was, it was just, I went into protection mode. 

Yeah. 

All right. Well, 

absolutely. Yeah, I was like, I don't, I don't need other kids to know that he has autism.  I don't want to tell our family because I don't want them to think of him differently.  He's who he's always been. This is just a better way to understand how he works. But I think to the bigger degree I just kind of at that point to just kind of pushed it away I did not make a big deal about it. Like I didn't research anything right away. I was just like, okay Well good to know  and then we moved on  we found out like beginning of summer.

So he wasn't in school We weren't really like, you know, we're not rushing out the door We didn't have as much  conflict because there wasn't like as much going we were very chill We had a very chill summer, you know spent a lot of time in the pool like You didn't have as much going on that would put some of these,  things that he had been working on, like to light just because we just weren't in our normal routine.

It really hasn't been until the last like month that  I've really like dove into researching, autism spectrum disorder, what that means. And learning about, like, if anything, like, so many things now I'm, like, looking in hindsight as I learn, you know, just the different ways he does things or thinks or says things or some of the, you know, just some of his characteristics. I'm like, Oh, like that. 

Even the way, even like the way he digests information, you know. 

Yeah. 

He's really listening, taking what you say, bringing it into his brain and being like, Okay, I get it. 

Like, to figure it out. 

Right. 

But on the same token, you could absolutely be talking to him and he is not listening at all.

Always, always in straight zombie mode. Yeah. 

Yeah. And, like, he's not, nothing's registering. He's not looking. It's like you don't exist when you're talking to him. But then he, at the same time, yeah, he can have a phone call. Full on conversation with empathy and stare right in your eyes. And just like, you know, it really fluctuates.

And for the longest time, I think we just,  again, the moments where he wasn't listening, we thought he was kind of like misbehaving. It was just like, Oh my gosh, can you listen? Stop doing what you're doing. Can you hear me? I'm talking to you. Like, take your eyes off the screen, which is exactly. And that's like common in a lot of kids, you know, like, I don't know how many times I wanted both boys ears checked.

Cause I was like, I, maybe they can't hear, I don't know. I don't know. Um, But the other thing that's to be mentioned too, which I think I just ran with that at first, is in this evaluation, it was also determined that like, Hunter has a really high IQ. I mean, he is like, his IQ is in the gifted category. And that wasn't surprising to us either.

I mean, what he's been doing and learning and what he regurgitates,  I mean, he, he can just remember facts like crazy. 

Anything about space, anything about a dinosaur. 

Yeah.

It's, it's pretty incredible what, uh, what his brain can just, pull up at any given moment about random topics, actually, which is kind of funny.

Or even outside of that, like, he'll hear a song. 

Oh, yeah. 

One time.  He'll be singing it later, know the words. It's amazing.  But I think I went into defense mode and just like focused on that, you know, when we first got the evaluation back and I was like, yep, see, knew it, kid was a genius. Like other things are interesting. We'll just deal with it when we have to. 

Aberdeen sign. Got it. 

Yeah, got it. Noted. Thanks.  What are some of the characteristics that you've looked back on? Or have you had moments, where you look back on things that Hunter does or maybe some things that he's struggled with and you're like, Oh yeah, that, that tracks.

Like from my personal 

No, no, no. 

Oh. 

Like for Hunter, has anything come to mind  I know myself. Like I, after. Really diving into this diagnosis over the last month. I'm like replaying the last six years of his life in hindsight. And I'm like, 

sure, when he was three or two and a half years, he was obsessed with circles.

Yeah. 

And he would go up to everyone and be like, circle, circle, circle. 

He would draw them. He would talk about them. He would find them. He was just obsessed with circles, which having a big interest in one very specific topic is very common with autism. I think when he was younger, too, he'd even switched over to space. He could recite all the planets in order. He knew about all the dwarf planets and stars and He would just knew all these facts at like three years old, and was obsessed. 

And then the other thing, he was obsessed with towing things for a long time. 

Oh, I forgot about that. You're right.

He was obsessed with that. 

Everything. He would tow everything. It started with an actual little tow truck. But then he took a pretend fishing pole and would like, hang stuff and pull stuff. And he would connect all his cars and like, yeah, he'll get into one thing and get stuck on it.

Yeah.  Yeah. And again, like, we just thought there were phases and, and he's our first child. Like, we just thought that was his interest and he loved it. We were just more impressed that he's so smart and he is. And we've always known that.

I think some of the things for me that have been  most obvious is, you know, his social interactions. 

Yeah, I think that's, that's a big thing that's coming to light now,  especially is how he interacts with kids of his own age. For me,  I coach his soccer and, you know, I see, you know, the other kids, and how they're interacting.

And then I see,  Hunter interact with them.  It's definitely not the same, and what I mean by that is, you know, is they'll be in the sidelines, roughhousing, or living in the sidelines.  I don't know, doing whatever five, six, seven year olds do, and Hunter's just sitting there by himself, and it makes me sad, but then, you know, it's also like Well, I mean, that's, that's who he is, 

but also to be noted, it's like, that's the difference that I'm realizing too, is like,  I'm starting to feel uncomfortable in some of these situations that I see him in, but he is not phased by it. He's sitting on the sidelines. He's not feeling left out. He's not thinking anything ill of these kids. He is literally just, he's fine. And I think that's like the other thing that's come to my attention is like, Oh, like he actually doesn't care. Like he doesn't care. 

Or it's not even. It's not even that he doesn't care, it's just to him, that's just, Oh, well they're, and again, I have no idea what's going through his head.

But what it seems like. 

Yeah, it's like, okay, well they're doing their thing, well I'm just gonna do my thing. 

Yeah. 

I think that's perfectly fine for him. 

Yeah. 

And if he, and if he wants to engage them, he does. And if he doesn't, he's, there's no,

I was just going to say that there really is no in between.

Like he's either all in like trying to hug and kiss his friend and telling him they're his best friend and he loves them, which we've had to talk about, 

talk about that. Yeah. 

Or teachers or adults. He's doing the same thing. Um, or he is just. Disengage there's really no like in between he's either like all in super excited to see somebody or he's just not 

Well, like, you know, for example, we played against one of his friends They used to go with a pre k and I coached with the dad of this child And he's like, you know, where's so and so?

And he's like, he's my best friend. And I remember the dad like looking at me and he's like, Oh, Oh, really? You know, because again, Hunter just uses that phrase best friends so much. And  

which we didn't know until this year, you know, like. First off, in preschool, all kids call everybody their friend. I mean, the teachers do that. They're like, Oh, come on in with your friends or like, which friend are we going to sit next to today? And like, you invite everyone in the class and like, that's just what you call them. They're friends. I mean, the first part of preschool kids are still kind of playing next to each other, like not like with each other.

And then in kindergarten we did hear about friends and I think everyone in kindergarten obviously was excited to make friends. It was a new experience for everybody. And so. He did. He had a couple play dates, you know, he had friends at his birthday party and everybody seemed to actually be friends, it wasn't until like the end of the year that I realized like, Oh, I don't see him talking to these boys anymore.

Or I don't see like, it kind of fizzled out. And he still had other kids that he would mention. And that would say hi to him. And he, they would play with each other, specifically two girls in and, And this year, you know, I haven't heard, and he keeps saying that this one kid is his best friend and he's actually a kid that's new to the school, and I was like, that would be Hunter's best friend because if anyone's going to talk to him, it's going to be Hunter, which I love because I'm proud that he's that kid. 

But, you know, I've seen them rarely interact, you know, a little bit after school, but like, I don't know how true that is. Because I tried to ask him, I'm like, do you guys play together at recess? And he's like, well, no, but I did talk to him in line today. 

Well, yeah, I mean, like, you know, I'm like, have you sat next to at lunch?

And he's like, No, he always said that he always sits with other people. And I'm like,

I tried to, but everybody else always sits by him, 

you know? So then I'm like, well, you know, what about so and so he's on your soccer team? What about, the other boy that's on your soccer team? And what I tried to explain to him the other day was, not everyone is going to be your friend, and that's okay. Yeah. You know, even a mommy and daddy, like, there's people that may not like us, and that's okay. 

I mean, not many. I'm just kidding.

 Yeah, and I, I think that's hard for him to register because also I think it's a, just a grade level where they're like, Oh, friend this, friend that, friend, friend, friend, friend, friend.

Yeah, I mean, he's still young. He's still young. Six and a half their first graders, but also I want him to learn that sooner than later that you know, again, not everyone and that's not everyone's going to be your friend and that's okay. 

But see, that's the difference. I think a lot of these scenarios, it's like we feel fear for him. We want him to like make genuine friends. Obviously. It's like my biggest goal in life is like, I want him to have good friends that like are really, truly his friends for who he is. But at this point, he doesn't seem bothered by anything. He doesn't understand that people aren't his best friend, but he doesn't actually know what it means to be a best friend. So he doesn't feel upset. 

I guess, I guess 

point in time, 

I guess my fear for him.  You know, is, is the one day come home and, that kid who's supposed to be his best friend. I don't know. I mean, it's just, 

well, yeah. And I think that goes back to like, I'm so happy that we are understanding all of this now so we can help him navigate these things. You know, he might be too young  to understand, and it might just not be his time to really grasp on to like, not everyone's your best friend. But there will come a day when he, Understands what a best friend is when he makes the best friend or makes a friend that is like always wanting to hang out with him and stuff. I think he's just still early on in his school years that he's just navigating like how it all works.  

It was funny. He was like, well, I hope he's in my class again next year. And I'm like,  well, if he is cool, if not, I'm like, don't make another friend. 

Yeah. Yeah. 

And I think that goes back to, I think he's, I don't know if it's like a fixation or if he's just like, He's gotta be my friend. In Hunter's mind, he's like, he's my best friend, so he's my best friend. 

Yeah. Well, and some of the other interactions that we have noticed that now, like, make sense is  one of the biggest things that drove us to get the evaluation too, is we were very concerned, like we mentioned earlier, of like, boundaries.

You know, he was hugging friends and telling his teacher, like, I love you, and, and, and You know, his kindergarten teacher was actually her first year, and so she embraced it and was like, Oh, Hunter, I love your hugs,  which is awesome. That's how she did it. But like, he's going to go in like with another adult who's not going to welcome that or friends.

And that's what was happening. You know, we'd be in the grocery store and he'd say hi to somebody or whatever. And then we're about to leave and he goes and like hugs the person in line next to us and like Obviously that's not okay. So, you know in therapy he worked about personal space and everyone has a bubble 

and Asking to hug 

asking for a hug even your friends, you know Because we didn't know how to properly explain it at the time Like you hug like your friend like it's okay if you know them your family Yeah, but even I feel like when it first started happening We're like that's so nice that you hugged your friend and feeling you can't hug strangers And then we saw him hugging like all we learned more about his definition of friends You And we were like, you can't, you got to ask, you have to ask for a hug.

Yeah, I mean, and now his teacher this year, she's a seasoned teacher and she taught him every time he leaves school, they do like this air hug. And it's, I appreciate it. Cause it's teaching him boundaries. So to go back to the original question of like, how did you feel with the diagnosis? I mean, I think we're both in the same position now, whereas like, we tried to push it off, didn't see it was a big deal, but mostly out of fear because we didn't want anything to change. 

Right.

You know, I wanted everyone to look at him the same, But then it kind of got to the point  again, being back in school and seeing him even interact with our family who sees him all the time, I want them to understand how his brain works and I want them to know so we can not only all support him, but just like understand how he works.

Like, I don't want to make up excuses for him and, or I don't want to have to, like, I don't want to be getting upset when people react a way that's not favorable, which is like definitely can still happen, but at least they have the knowledge of like, what it means to be on the spectrum. So yeah, I think just at this point, I'm really happy that we are diving into tools and I mean, we're, we have so much reading to do. And, there's groups out there that I've started to try to connect with and just to learn more. And then of course,  as we learn more and kind of decide when the time is right and what is the best way to talk about autism

with Hunter, we will. Great. Cause I think one of those things like when we do talk to him about it, I think just knowing him, he's going to broadcast it to everyone.

Yes. 

And again, it's not like it's a bad thing, but like,  you know,  I just, you know, I could just see him be like, Oh, my name is Hunter. I'm da da da years old. Guess what? I have autism. You know? 

Yeah. 

And kids who don't know what that is or don't know anyone with autism,  he's no matter what, he's going to look at that as a positive, right?

And Which is also like, Yeah. Yeah. Amazing because that's hunter.  We'll see, but I think it's scary for us to have him even say that just because we know that not everyone's going to understand. 

Right. And I guess more or less, I'm just talking about like kids, 

right? But I think it is going to be good for him. And I can see him reacting that way too. Him just being like, well, I'm smart because I have autism. 

I don't, I don't see him looking Hmm.  When we do decide to have a conversation with him, I don't see him looking at it as like anything negative.

No. 

I think he's just gonna look at it as like another like, you know, tool in his tool belt. 

Which is important because you know, I've read so many statistics about and again, just we grew up in a different time like we mentioned  People weren't being diagnosed like they are now and I think the statistic now I read is something like don't quote me on this but like one in 33 kids are on the spectrum. It's like so small and before it was like hundreds. And this is like, I mean, I don't know all the details or the science behind all of it. One of my first thoughts too, when finding out the diagnosis was like, Oh, it was because he was a preemie. Like it was because it was a preemie and there's all different kinds of risk factors, but I've also been learning. It can be hereditary. Like we could have people in our family. You know, the spectrum is big who are on the spectrum. And.  Obviously never knew it like that's just like who they are what they do and how they work and we just over the years It's been passed down and we just had no idea  And also,  when he was born he had a very traumatic birth, which is another big Risk factor and he had a brain bleed 

brain bleed 

Yeah, so, between the brain bleed and all of that and and who knows, you know, I truthfully don't need a answer as to why but I'm happy we understand more now and one of the things that we're going to talk about next week on the podcast, I talked to Kari about is, you know, we do touch on how to tell your child, because there are statistics that show the sooner somebody who has autism or ADHD or any kind of neurological difference,  the sooner they know and understand themselves, the less likely they are to grow up and have depression and anxiety, because, there's so many people our age now who are just learning that they are on the spectrum or that they have ADHD as adults and they just always thought they were this way. And they're like, I just struggle at work.

I just always struggled in school. I struggle to pay attention. I struggle in my relationships like and are now learning like there's a reason for this because I'm on the spectrum and. I was not given the tools or the empowerment to just know that my brain works differently. So that's my biggest hope. And what I touch on with Kari, I think she mentions how, you know, an easy way to explain an age appropriate times is just starting to talk about neurodivergence. So like talking to our kids about how everybody's brains work differently and it's not good or bad. It's not right or wrong. It's just. different 

just the way you were born.

Exactly. And I think the more that we hit that narrative home and like, teach them that then I don't think the conversation is going to be as big or as scary as I have dreamt it in my thought of it in my head. I think you're gonna be right. I think it'll just be like, Oh, okay. So can I go play now? 

Yeah. Yeah, I was gonna say, I think we're gonna have to Be prepared for questions because I'm pretty sure like once he hears that it's you know Again, just the way he is he's gonna think and he's gonna have some questions and 

I think I'll circle back 

Yeah, I think we'll be more than ready. But yeah, it's your point. I think we'll  tell him and then they'll be like, okay 

 Yeah, and so for those listening, you know If you have a child who has been diagnosed with one of these invisible neurological disorders meaning you couldn't look at your child and see that there is, a disorder or something else going on, whether that's  ADHD,  anxiety, all these things, just know that there are so many resources out there.

Like I said, I'm still, like, diving in and will always be learning, right? Because  for the parents listening, you know that, like, your kid, in general, is always changing. As soon as you figure them out, you're like, They're in a different phase of life. Yes, exactly. So, this will be a lifelong journey of learning and supporting Hunter. And, with this information, I know that I've even been looking at, uh, Noah differently, you know, um, just knowing his sensory issues and  he's a very different personality than hunter There are similarities sometimes and I don't know if it's just because again, we're family they're brothers They spend time together or if they have some of the same challenges, but at least everything is on our radar now We Know what to look out for and we're learning how to support them.

So we'll have to take that, one step at a time, but I did read that,  a sibling, especially a boy who has a older boy sibling for whatever reason is  20 percent more likely to also have autism. So we will see, 

we had a meeting at the school with them to discuss if he would need an IEP, what kind of services or anything that he would need. And at this point. He does not have an official IEP and that's because he does go through his day pretty fine.

 It's more so his social interactions, that he might struggle with or might be different. You know, it's not even an issue at school. It's just who he is. Um, so assistance isn't needed at this point, but every year we'll meet and kind of regroup and see what he might need as the curriculum gets better and better.

It's more advanced and what that looks like. And on the flip side, you know, we'll be in touch with them to see what kind of advanced classes are available to him because he, uh, especially in a sentence, yes, excels in math. I was going to say for sure. So does Noah. It's crazy.  Well, I'm glad we got to sit down and have this conversation, and share it with our listeners just because next week's episode is really great.

And It's so funny how things all kind of, I'll say, fall into place because sometimes I am presented with these guests and , I meet them at the exact right time where I need to hear what they have to say and what they're putting out in the world. So not only am I always hoping that these episodes are beneficial to you, but And you find value in them, but honestly, half the time they hit home for me right when they're supposed to, so it's a good episode next week.

Tune in. 

Thank you. I was looking for my words. Tune in. Give it a listen. And,  you're sick of hearing me say this, uh, sorry about it, but before you click out of your podcast app, check the show notes. Most importantly, hit the link that says sign up for our newsletter. We have a weekly motherhood intended newsletter coming at you soon.

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I just want to say thank you for having me on the show. 

I was getting there, Joshua, thank you for joining me, husband of mine, always love chatting with you on the mic. 

It's a great chat.  

I know we should do this more.  

I know. I really should.

I know. We tried some bonus episodes. The hardest part for us is not the talking part. It's the finding the time to do it, but  I've also talked with the idea of we should start a podcast. 

Yeah. Okay. 

Wow. 

We shall see. Okay. Well, let me know if you think Josh and I should start our own podcast and, uh, and if so, what do you want to hear from us? Do you want to hear about our life? Do you want us to give like advice? We have no business giving. 

Yeah. 

Do you want us to, I don't know, comment on the shows we're watching? Like what do you want to hear from us? Or do you not want to hear from us at all? 

I'm okay with that too. 

Reach out, reach out. Okay. I hope everybody has a great weekend. Thanks again for listening and you'll hear from me again next week.