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Hello everyone and welcome to today's episode of On the Spectrum with Sonia.
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Just imagine having kids and having them be diagnosed young as being neurodivergent.
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Back when I was growing up in the 80s, people did not know much about what it was like to even be on the spectrum, especially if you were a female.
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But as the years went by and as more training and education was disseminated to the public, people are more aware of what neurodivergence is.
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And here to share her story with us today is Sarah Hartley.
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She is an author of the book Purposefully Me, which has 14 different characters in the book.
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And it was written for elementary age school children.
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And it talks about topics such as bullying, how people show up differently when they are neurodivergent.
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For instance, somebody with autism, somebody with ADHD, how they may appear, how it may affect different people in different ways.
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Also, the impact of school drills, as everybody remembers, I'm sure the infamous fire drills we used to have once a month in schools.
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Sarah also came up with align parenting as a way for caregivers of those with special needs and neurodivergent children, how they can also use that to regulate themselves.
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And here to impart her wisdom with us today.
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Welcome, Sarah, and thank you so much for being here.
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Thank you for having me, Sonia.
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So, Sarah, how old were your kids when they were diagnosed with ADHD and sensory processing disorder?
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My oldest, uh, we went down the path with him pretty early on, more starting through early intervention around two, two and a half years old.
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It wasn't until he was about four when we started the process of him going to early access for kindergarten.
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He is very tall and very bright.
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And so he only misses the cutoff by 10 days.
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And so we wanted to go through a psychologist to be able to understand more around does he have ADHD?
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Does he potentially have autism?
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Does he have ODD, a defiant disorder?
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So we wanted to take a look at the full gamut of all the possibilities and then also have his IQ tested at the same time because he seemed like he was pretty far ahead.
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So we knew we noticed the sensory things first and went through when we did the early intervention evaluation.
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We actually had to go through a checklist of sensory sensitivities and items to try to see if he had sensory processing disorder.
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That was diagnosed around two and a half.
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And around four and a half, once we completed the full evaluation with a psychologist, we then had our answers around his ADHD diagnosis paired with the sensory processing disorder, and that he was also highly gifted.
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So he is now nine.
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And so it's it's been a while for him.
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And my youngest, um, we noticed the same sensory sensitivities very, very early on, presenting a little bit differently than my oldest.
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Also thought that he seemed gifted as well, but in a totally different way.
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And now he is six and he's in kindergarten, and we're really starting to see some of those ADHD signs as well.
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He just presented differently, so there wasn't as much of a rush to be able to get him that full evaluation, where my oldest had a lot of aggressive behavior and he's very hyperactive.
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My younger one really kind of his main thing was he still will just fully engross himself and pretend and make-believe play, where he will just spend hours.
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So he's really, he'll get very hyper-focused on certain elements.
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But I've noticed him being impulsive.
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He does great at school, but he struggles a bit when they go out for recess or maybe even at aftercare, where it's a little bit less unstructured.
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And then his school actually gives an evaluation using the COGAT.
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And they do that, which is more of an IQ test.
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They do that in both kindergarten and second grade to really learn how does this child learn, you know, and how can we adopt and adapt to the child and meet them where they are versus, you know, teaching just one classroom and everybody has to fit the mold, which is actually why we chose this school for both of them.
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And so it's a wonderful school.
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And so we just received his test scores last week, and he is also highly gifted as well.
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So he'll start the gifted and talented program in first grade.
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So we're um starting the process of getting him evaluated for ADHD.
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And, you know, I'm not a doctor, but if I had to put my finger on it, I would say that that's what's going on with him as well.
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So you I you said that both of your kids they presented differently.
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So, what were like the symptoms you were noticing that led to a diagnosis of sensory processing disorder?
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The interesting part for my oldest, my sister-in-law actually uh has twin boys, and and they are um a couple years older than my oldest son.
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And so one of her sons had a bit of sensory sensitivities.
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And the first thing she had noticed, and what she told me to look out for, was does he walk on his tippy toes?
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And that was a really interesting one for me.
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And I thought, okay, I could understand more of the loud sounds or not wanting certain substances or play-doh or things on your hands, or the itchy tags, which all of those uh were also things that both of my children struggled with.
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But with my oldest, I did notice very early on around age two that he was walking on his tiptoes.
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So that was just a very interesting one for me.
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But she said that, and then I started paying attention more, and I said, Yep, that's that's exactly what's going on.
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So it was interesting to and I'm so thankful that I had someone else to guide me.
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And I've been very fortunate along the way to have several different friends or family members to just point out some of those certain things and say, Hey, maybe you should think about this.
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Um, and for me, I I had no idea.
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Like you said, back in the 80s, I grew up in the 80s as well.
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I was not diagnosed with ADHD until I was 25.
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I had no idea.
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I knew that I was in kind of what would be considered more of a gifted math and other subjects, but I it wasn't labeled that at the time.
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So I just didn't quite put some of those things together.
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And, you know, there we were never given the strategies or told really the full spectrum of what does all of this mean and what are some of those things to look out for.
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It's interesting you brought up the walking on the tippy toes because I used to do that too.
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And I remember this vaguely now that I would never want to put my heel to toe on the floor when I was younger.
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And so it kind of affected my gait for a little while.
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And but for me, you know, back then I grew up in the 80s and 90s, and very much like you, I was diagnosed as like learning disabled and ADHD first.
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But that started young because that was because I had to redo second grade.
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Okay.
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And it's interesting you bring that piece up because I I mean, it took me I was only 20 when I got diagnosed with autism spectrum.
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But yes, the loud sounds and things I had issues with for a long time when I was younger.
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And I wrote about this in my book too.
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I had trouble getting in the shower, you know, and things like that because the sound and the temperature and sensory of that type.
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But I had to learn a system.
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And then I also had to learn how to walk properly.
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Wow.
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And and I don't know if if you were at all the same, both of mine, it's the idea of even getting into the bath or into the shower that is something that they don't even want to do.
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Same thing with food.
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They can visually look at it, and if it's not visually appealing, they won't even try it.
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It's like, nope.
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But with the bathtub, it's such a struggle to get them in.
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But once they're in, I can't get them out.
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Right.
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They find that comfort, and I think they start to realize, you know, the second I get out, the temperature's cold.
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I'm gonna feel uncomfortable.
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You know, there's just that big sensory element that comes into play.
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So I could never get them in and then I can't get them out.
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And it's that still holds true to this day.
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Yeah.
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I, you know, one thing that helped me, I know for sure, is when I learned how to use the thermostat to make it so that the bathroom would be warm and comfortable temperature before I got in the shower and after I got out.
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And then then things got that's when it clicked.
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But, you know, but before then it was hell and back.
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And I remember I used to have to take bucket baths when I was a kid, you know.
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So for me, that but one of the things that could be helpful then too, if you have like a heater or something, you know, maybe putting that in the bathroom, getting like a portable heater, if you could put that in the bathroom or something to just, you know, regulate to make it a little more cozy.
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Absolutely.
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That's a that's a great idea.
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I live in Denver, Colorado.
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So the summer it's not too bad.
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And you know, we're not there it's much easier to get them in and out when it's the summer months.
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But now that we're hitting those those cooler temperatures and into winter, even the floor is cold, you know, just everything about the air when you're coming in, it just has that additional feel that makes them uncomfortable.
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Right.
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And then yeah, that's yeah, that's always like the hard part, you know, it's just for me, it was the act, but you know, once you get into the routine and make it a habit to shower daily, and this is what I work with with my clients as well is, you know, you gotta will yourself to get in the shower every day.
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It's because of your hygiene, it goes to health, right?
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So like things like that.
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Yeah, that that helped a lot for sure.
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But so for the older child, you know, going back to that, it's so it was more you notice more of the sensory, like he would walk on his tiptoes, wouldn't try a lot of things.
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He would be startled by certain sounds.
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Oh, yes, unless he was the one making the sound.
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You know, he would he'd cover his ears, any kind of loud noises.
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You could tell him he was very outgoing, very personable, so easy, really, between you know, birth and and two years old.
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He I could take him anywhere.
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He was such a happy baby, slept early on and right away, um, which I think he's he's technically, he's definitely my child in that sense, where um, you know, he likes to sleep, and that I do as well.
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But he was so easy, and then it was all of a sudden things started to change around 18 months, and slowly but surely we we would notice a little bit more.
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And then, you know, the sensory processing piece was there, and we had taken all of the tests, but once his brother was born, right after a few days before he turned three years old, it really exacerbated all of those sensory symptoms and it went from we know this is a thing, and it seems maybe mild in essence, but once that big life change happened, then it fully exacerbated and it became more of that issue of we really have to get into OT.
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We need to make sure that we're able to do all of this.
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And then, of course, we finally got him into this um, this preschool and where he had an OT there daily.
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And then the pandemic hit.
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And so my youngest was about four months old.
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And, you know, it got to the point where we had just started the little one and I was back to work and started him in a new daycare.
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He was there for maybe 10 days, and then we had to pull him out because of the pandemic.
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Mid-April, my older one, the anxiety was so high at that point, he started to not sleep anymore.
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And the little one was already up, you know, multiple times during the night because he was, you know, only a few months old and went to his doctor, like, what can we do?
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We ended up sending my oldest and just having to, you know, hope for the best during during the pandemic.
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And I called the daycare and said, We're gonna keep the little one home.
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He takes three naps a day.
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Can we send our older one in his place?
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I will still pay for the newborn, you know, pricing, because that's more expensive than the three-year-old pricing.
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And just let him have some structure so that he can feel a little bit normal and have that anxiety just helped a bit in that scenario.
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Um, and going to OT, we weren't really able to go in person.
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So we enlisted all of the grandparents and aunts and uncles.
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And, you know, it was either Christmas or birthday that they we said, here's a full list from Amazon.
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And we built an entire sensory gym in our garage to try to make that work for our oldest because he needed something.
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And I my heart goes out to all of those parents during that time where we just had to pause.
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And there are some children that you really can't stop those kind of early intervention services.
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It's detrimental to for everyone.
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Sure, sure.
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And you know, they're even saying that a lot of kids now, if they've already been struggling socially post-pandemic, that's gotten even worse because they had no chances for exposure.
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And because everything was online and it changed the way people were interacting anyway.
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Yeah, there are going to be certain age groups that are, you know, so much more impacted than others.
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I mean, thankfully, my oldest now says it's it's hard for him to even remember when he did have to wear a mask to school.
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And I said, Well, your preschool graduation, everyone was outside and we were all wearing masks.
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You even had it decorated.
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Each child decorated their own mask, wrote their name on it, you know, wrote the year.
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Um, but he doesn't really remember all of that.
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And thankfully, my youngest never had to because he was too young at that time to wear the mask.
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And so by the time he was actually going to school, thankfully all of that had been lifted at that time.
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So he doesn't remember.
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But we had to do early intervention with him as well because he has a left side facial palsy from an absent cranial nerve seven, which controls your ability to blink.
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And then, you know, he has a droop in his smile.
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Um, and because of that, we weren't sure if he was going to be able to eat solid food.
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And they had stopped all of the swallow testing at children's um hospital in Denver.
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And so that was just such a difficult time, I feel like, for everyone that, you know, different age ranges were really impacted and in multiple ways that I I hope doesn't last long term, but I think for many it does.
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So, like when you had during the shutdown, when you had the gym set up, the sensory gym, what noises in particular did you find that they were responding to the most?
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You know, like in terms of getting startled?
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You said unless they were, you know, your eldest was the one making the noise.
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What kind of things did you notice about them being startled by?
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It was more of sudden noises, and whether that's a door that slams, a dog that barks, um, you know, a fire truck that goes by.
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The room itself, if you were in, say even in public and everything was loud, you know, they eventually adjust to that volume.
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And so, you know, or if they had a song that they loved, I think the ADHD brain also will just want to play that same song on repeat over and over again.
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And so if they were excited about something, I remember my oldest Moana was very the first one was very big at that time.
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And, you know, he loved the some of the soundtrack to it.
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So we could play that loud, no issue.
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You know, and he would beat the drums and have the best time.
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But if it was something that he didn't like, or if it was a sudden startling noise, um, which is another thing with with ADHD, of where we get scared very easily.
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Like you could, we'll be so deeply in thought that somebody will come in the room and all of a sudden, you know, you're just you you're crawling out of your skin because someone startled you.
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So it it really just depended on um what the noise was and and that how loud that portion of the sound was.
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Um but we also listened to there was a soundtrack that one of the OT offices had given us.
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It was classical music, but it had some really scratchy, um, which it was almost painful to listen to, but that was part of the sound therapy that we did at that time, where we would listen to that in the car.
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He didn't really like putting the headphones on.
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So that was a tough thing for us of, hey, you need to do sound therapy, but just the the feel of the the headphones became so difficult for him that he just said, I won't put those on.
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We ended up listening it every time that we were in the car, and that was really the only place we could do it.
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So was it like a certain kind of repertoire of songs that and sounds that he would have to listen to?
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Exactly.
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Yeah, I believe there's something similar.
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Uh back in 1991, I went to Canada for two weeks in Montreal because they were doing um hearing sensitization treatment, and that was the only place that was offering at that time.
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And it was the same, it kind of goes into reminds me of what I went through uh where the they would give me a set every day.
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I they would give play the same repertoire of sounds.
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It was to a point where I was able to actually remember the whole repertoire in my head.
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Oh wow.
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So I kind of knew what's was gonna come next, what was gonna come next, what was gonna come next.
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Did you find that it was helpful to go through that treatment for him?
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It was for sure.
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Um, you know, and as as far as I mean, I think there's kind of a spectrum to everything.
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And with the sensory processing disorder, what my oldest struggled with the most was he was a vestibular avoider.
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So he always felt like he was in motion.
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He didn't want to swing, didn't want to ride a bike.
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Certain things just felt like he was in motion, where it it kind of felt like his body was out of control.
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But he was a proprioceptive seeker.
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So with proprioceptive input, they liked the deep pressure, you know, strong hugs, you know, crashing into things, falling on the ground on purpose.
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And so, because of that, those were probably the two main things that seemed to be the most outstanding of all the senses.
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I mean, despite that, you know, of course, he had tactile things where he was not my messy baby.
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My little one is my messy baby, you know, covered in spaghetti.
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My older one did not want to touch food.
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He didn't want to touch um play-doh or slime or anything like that.
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So we tried to get him, you know, more involved, which made it difficult when you have a mixture of multiple different sensory elements where they avoid some and they seek out others.
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And so with the sensory gym, we built a climbing wall.
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He was very active in a huge crash pad and you know, had a handyman come over and he put up the wall and you know, added all of the little thing, the holders and placements for the climbing wall.
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We had the big crash pad, we had a little jungle gym and a big ball pit.
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So the ball pit also was a really great one for getting that proprioceptive input.
00:19:17.180 --> 00:19:19.420
And we still have the crash pad now.
00:19:19.500 --> 00:19:28.700
You know, most of the things we've gotten rid of over time and just as they've aged out, but the crash pad still seems to be one that both of them really love to use.
00:19:28.860 --> 00:19:32.539
And my little one loves gymnastics and is reminds me of myself.
00:19:32.620 --> 00:19:35.100
When I was little, I was always flipping upside down.
00:19:35.180 --> 00:19:38.140
Anytime I saw a patch of grass, I ran and did a cartwheel.
00:19:38.299 --> 00:19:42.460
And he is just constantly doing flips on furniture or wherever he can do one.
00:19:42.620 --> 00:19:47.500
So he had taken a little break from gymnastics, but we're gonna get him back into it in January.
00:19:47.820 --> 00:20:00.299
But he's, you know, one that all of those little elements of things, and what I learned over time was it wasn't just about the sensory input they were receiving, it was the organization of that sensory input.
00:20:00.460 --> 00:20:05.580
And so with my oldest, what we would do is I would put a mixture of letters up on the top.
00:20:05.660 --> 00:20:13.340
Uh, I created the wall where it was a chalkboard wall, and then it had a magnetic paint behind that chalkboard paint.
00:20:13.420 --> 00:20:19.660
So we were able to stick those little, you know, the the letters that you can put onto a refrigerator.
00:20:19.740 --> 00:20:28.060
And so we put, I'd put the letters up top and have those um as a mix of a word that was, you know, something that was easy for him to spell.
00:20:28.220 --> 00:20:34.620
And then one at a time, he would go grab the letters and then bring them down and make them into that word.
00:20:34.860 --> 00:20:47.340
Or it would be, you know, I want you to go into the ball pit at one at a one at a time and pick out a pink ball, then a green ball, then a blue ball, you know, um, or I want five blue balls, but you know, you can only do them one at a time.
00:20:47.500 --> 00:20:48.940
And so it's being able to get that.
00:20:49.340 --> 00:20:54.220
That input all while organizing organizing the way that it comes into your system.
00:20:54.460 --> 00:21:05.100
And that has sounded like a very genius idea as a way to continue with providing them that support they needed, but also teaching them skills at the same time.
00:21:05.420 --> 00:21:05.900
Absolutely.
00:21:06.140 --> 00:21:08.299
And it seems to have also paid off.
00:21:08.539 --> 00:21:17.259
Um, so what then inspired you to start writing and come up with the aligned parenting methods?
00:21:17.500 --> 00:21:21.100
So I really just at a pretty low point.
00:21:21.259 --> 00:21:28.539
It was not necessarily post-pandemic because it was 2021, but you know, we had been in it for uh quite a bit of time.
00:21:28.620 --> 00:21:30.860
And it was around August, September.
00:21:30.940 --> 00:21:33.420
Um, I was actually diagnosed with Lyme disease.
00:21:33.580 --> 00:21:42.779
And so there was a lot going on between both of my children, their diagnoses kind of all um compounding into one um time frame.
00:21:42.940 --> 00:21:47.900
And I had this moment in the shower where I think some of us can do some of our best thinking.
00:21:48.140 --> 00:21:51.259
And I just thought to myself, what is my purpose?
00:21:51.420 --> 00:21:52.380
Why am I here?
00:21:52.620 --> 00:21:59.340
And I proceeded to get out of the shower and opened my notes app on my phone and wrote that first book.
00:21:59.500 --> 00:22:00.700
It was very loose.
00:22:00.860 --> 00:22:11.340
It was, it was more of just kind of me working through my own emotions and trying to get a lot of of what I was feeling out onto paper.
00:22:11.580 --> 00:22:18.060
And from there, uh every night with both of my children, since they were little, we'll say words of affirmation.
00:22:18.140 --> 00:22:22.460
And it's kind of grown along the years and into um what it is now.
00:22:22.539 --> 00:22:24.940
And so we would say, I'd say, repeat after me.
00:22:25.100 --> 00:22:30.700
I am kind, I am smart, I am lovable, I am brave, I am enough, I am safe, and I am a great kid.
00:22:30.940 --> 00:22:38.620
And with all of that, I started pulling together, okay, maybe there what each of these things could be a book of itself.
00:22:38.779 --> 00:22:40.220
And so it took a little time.
00:22:40.299 --> 00:22:45.820
And, you know, with a full-time job and both um neurodiverse children, you know, here and there I would work on it.
00:22:46.060 --> 00:22:52.940
And last July of 24, I hired a book coach who was actually a former colleague.