Episode 27: Different, Not Less: Building Advocacy with Devon Maycock

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Hello and welcome to Hear Me Out, the official podcast of the Masonic Children's Clinic for Communication Disorders.
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This is the place where we dive into all things related to communication disorders and how we can best support the kids and families affected by them.
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We will be talking with speech language pathologists, clinic staff, families and donors to share stories, insights, and the impact of providing free speech, language and hearing services to children across our community.
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I'm Niki Lampi speech language pathologist and director of the clinic, And I'm Tamara Pogin, also a speech language pathologist with a focus on working with autistic children and their families.
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And we are your hosts.
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We're so glad you're here.
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welcome.
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Devin Maycock joins us today to share her story about her son Henry, who is autistic and has received services at the clinic in the past.
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Devin has a background in social work and is a fierce advocate for her son and for others with disabilities.
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She is here to share her story and talk about how we can all advocate for others through simple everyday interactions.
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Hi Devin.
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Hi.
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Hi, Devin.
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So I wanted to be upfront.
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Uh, I got to work with your son.
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I was his therapist for two years and it was a wonderful, rewarding experience that we took on together as a journey.
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And it was, it was a big regulation before communication journey.
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It was trying so many new things.
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He taught us both a lot, a think a lot, a lot.
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And that we could find, play anywhere with anything.
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Mm-hmm.
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So I really, yeah, he was definitely a good teacher.
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Mm-hmm.
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Yeah.
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Spatulas that point in time.
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Spatulas were the thing, well, what was the spatulas He used to carry on a spatula.
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And the end, if it has like the spot where you can hang it, he liked to stick his fingers and just wiggle it.
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Oh.
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And watch.
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Mm-hmm.
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The wiggle and feel the weight of it.
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And.
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Honestly kind of inspect and figure out like, oh, why does it wiggle like that and what's it doing?
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And you think about the magic pencil trick that some people like to do, and it's that, that visual, input that just looks so interesting because you, you know, he'd wiggle it lots of different ways on the side up high.
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He'd like the sound.
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I thought it was interesting that you mentioned he liked the weight because the weight differential from the handle to the rubber part.
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And he was just such a little scientist with it.
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But then he so much enjoyed when we understood the joy he got from it.
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Mm-hmm.
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And then you guys started getting spatulas for presents in his favorite colors.
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Christmas this year was a Mickey Mouse pancake flipper and a mini mouse pancake flipper.
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And they're like the perfect size and weight.
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So we just randomly see like, so cool a Mickey spatula.
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Pop up in the house and they, and he has other interests that you definitely also encouraged and, and followed those interests as well.
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Because at the clinic care we definitely, say follow the child's interests.
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Follow their lead.
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And that was something that you definitely became a pro at as well.
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Well, I love how you said, you know, when he realized that you could find the joy in it with him.
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Mm-hmm.
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How important that was, you know, and I think sometimes people assume like, well no, I want him to play with something different, or something maybe more age appropriate.
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And it's like, it doesn't matter what he plays with the, the point of playing is to have that joy and have that connection.
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And I love that you facilitated that with him.
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And something that Henry has always been really good at is self advocating.
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He.
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Doesn't speak, he uses gestures, but if he is like that, ain't it?
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Mm-hmm.
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You will know.
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And he's like, mm-hmm.
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I will not play with that toy.
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I will not do it that way.
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Like, we're gonna do it my way.
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Which very quickly taught Andrew and I like, just go with it.
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Like who cares what he plays with.
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He, for the first four years of his life, his comfort item was a little pink cup.
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The pink cup went everywhere.
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He slept with it.
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He took baths with it.
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It went to school with him.
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It was the thing to the point where the first time we lost it and didn't have a backup.
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Oh, we panicked.
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That was hard.
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Yeah.
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And then I panicked, bought several more backups, and then shortly after we had.
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Five or six pink cups.
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He was like, I'm all done with that.
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All done with that.
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Oh no.
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Yeah.
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But also I think that because he was such a great self-advocate, he also learned how to initiate body conversations or, or gestural conversations with you because he was, then, once he saw that you allowed him to do it, he wasn't self isolating to do these things that he loved.
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Mm-hmm.
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He was bringing you into it and being like, well, if you're gonna you, because we would do this, this game with, it was a pink, uh, wrapper snapper.
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So it was a tube that was collapsible and, and you could put together kinda like an accordion tube.
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And I'd had two of them and he's wiggling one, and I'd wiggle mine and he'd be like, oh, that one looks good.
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I'll take it.
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But then he's like, wait, you need one?
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So he'd give me the other one.
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Oh.
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And then we would just switch it back and forth and then, and then we would like, I'd do it over my head and he's like, Hmm, that's interesting.
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I'm not gonna do that, but I'm watching you.
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And then in a few minutes later, he'd be like, that thing you were doing.
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You know, and he'd either like, show me somehow or he'd do it himself.
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Not for very long, but then I'd be like, oh, we gotta do it up here.
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And he didn't wanna do it up there.
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He wanted me to do it up.
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Mm-hmm.
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It just things like that, that you're thinking, what does that mean?
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It means that he's getting his point across.
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It means that he is wanting to have fun with us and then we worked on how to shape that into getting other needs met.
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Well now, because we've always been very Henry led, I feel very strongly about, like, he lets us know what he needs in his way and it's our job to figure it out.
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And he now, just in the last maybe month or two, is starting to connect with Fiona and he is six and she is four.
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And he has not really cared to have her around.
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He, he will leave the room, but now like she's figured out.
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How to, I don't just get it, get in with him.
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And now he is starting to initiate, he will go up to her and he will put his face up to her face and he will smile and start to giggle.
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And that means that he wants her to like tickle him.
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And then that turns into Chase.
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And one of the first days that this happened, they played together doing that for an hour.
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Wow.
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And Henry doesn't hardly do things for, I don't, two or three minutes sometimes, but he was just loving it.
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And he, after that was the most calm, regulated, happy.
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Like Andrew and I just kind of looked at each other and were like, she's going to be his favorite person.
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Yeah.
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That's so sweet.
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And he, for the first several years of Fiona's life, he's like.
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Eh, it, there's, she's not doing anything.
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She's just sitting there.
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That's the thing.
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Yeah.
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Well, that leads us to Yeah, your history and things like that.
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So tell us how your story began and how you found your way to the Masonic Children's Clinic.
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So, I have a master's degree in social work.
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before having Henry, I was very interested in doing trainings and learning about working with autistic children because I found it fascinating because interventions are different, they think differently, and through working, there were a couple of autistic kiddos that I had, and they ended up being very challenging, like in the mental health setting because the way that you treat mental health and the way that you approach autism can be very, very different.
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Um, so I was very interested in that very early on in my professional career.
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And then I had just had a lot of the education and the knowledge that when Henry was about nine months old, I started to just notice like he's not really talking, he's not copying things that we're saying.
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Um, it was also, he was nine months old when COVID hit.
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And so then we went through a, well, we're not leaving the house.
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He's not having interactions outside of our home.
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How much is that kind, kind of trying to rationalize what we were seeing and what I was seeing.
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Right.
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Because that was so different for everybody and everyone with little kids at that time, and I didn't actually bring up the word autism with my husband until Henry was maybe 15 months old because I was like, Hey, I'm noticing like some of these things, like he's not looking at us and he's not responding to his name and he.
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Would copy some words.
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but at 15 months the words stopped.
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Like he stopped saying hot every time he was next to the stove, he stopped saying, cat, when the cat came near us, he stopped saying no and all done, which were things that were very regular and routine.
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And so he was, he was 15 months old when I was like, here's, here's what's up.
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And again, COVID.
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So we waited and there wasn't really much we could do.
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was anyone seeing kids for evaluations at that time?
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I, at that time didn't even start looking into evaluations.
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my best friend is a special education early childhood teacher, and she was like, reach out to help me grow, fill out that and just get'em eval and see.
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See what happens.
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which we waited a while for that.
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I think Henry was two and a half before we really did much of anything.
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You're told wait and see.
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And I didn't wait and see because anyone was telling me, I was like, I, I've got this, I'll wait and see.
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I don't know.
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we'll just see if it's COVID related, if things will change.
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and so Henry was maybe not quite two and a half.
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'cause we did help me grow services for about nine months.
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we started in September when he was two and he turned three in June.
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and Help me Grow was an amazing program.
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His evaluation was great.
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Um, he qualified in all areas, but he was really challenging to work with and I could tell that for.
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For his teacher.
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It was very challenging and I felt that I wasn't getting what I thought I wanted out of things.
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And at that point I was not, I would say I was not the advocate that I am now.
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And I was like, well, and it is what it is.
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And I'm from Duluth and so I've always known of the Scottish Right Clinic.
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And Masonic came up in one of our Help Me Grow sessions.
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And one of the helpful things that we did get out of it was his teacher was like, yeah, I would, I would reach some knowledge of working with autistic kids.
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and so I immediately, very, very quickly after starting Help Me Grow, reached out to the clinic and we got him in here and that, that's where we started.
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Masonic was kind of our.
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Like, I like to say, that was our start.
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That was the start of our journey.
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So when he was in Help Me Grow, did they mention autism to you at that time, or did were you thinking that?
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I mentioned ti.
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Okay.
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The evaluation with the evaluator, she was great.
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And I was like, so we're gonna, I'm gonna throw out autism.
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And she's like, well, we don't wanna talk about labels and da da.
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And I was like, well, I do.
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I was like, here's what I'm seeing.
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And she's like, well, he's gonna qualify for services.
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Mm-hmm.
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Regardless of what the need is.
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and everybody, I think there's this sense, everyone's like, well, you need a diagnosis to get services.
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And that's absolutely not true.
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We have every single service now that we started when he was really little, minus helped me grow.
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He grew out of that.
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And we didn't have a diagnosis.
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We didn't need a diagnosis.
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What we needed was a doctor.
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To, to say, okay, I will put in this referral for speech and ot.
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Okay.
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So he just needed the doctor part to get started to demonstrate the need.
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That's, and then of course, at the Masonic Children's Clinic, you just, again, we just needed to demonstrate need.
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We don't need a diagnosis to, to serve, and then help me grow.
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They just need to demonstrate need as well.
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And that's why sometimes they're also sometimes a little reticent to be, to throw a label on it.
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Mm-hmm.
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And, and that can be, that can be good, but it can also be for our artistic children.
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It can be frustrating because there, there are some services that you get which is so great that we have helped me grow in the school system.
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and then Masonic and some other places.
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but then there's almost like, there's this wall.
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That happens.
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And I know that as you developed and as we got to know each other and as you were seeking out more, then you said, oh, in order to get, some, in order to get county services Yeah.
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Or all of the extra things you do need a diagnosis.
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And it, it can be really scary to get the diagnosis piece.
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And I think a lot of new parents, like I was one, hold on to the, well, we don't have a diagnosis.
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It's okay.
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Mm-hmm.
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Like we can wait, we can wait and see.
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There isn't a diagnosis and no, no doctor, no assessor wants to be like, yes, autism, we're gonna like give you this big thing where you can qualify for all these services.
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doctors and providers often do say, wait and see.
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Mm-hmm.
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And sometimes that might work out, but it.
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What I think that does is just causes parents to second guess their gut feeling.
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Because if a parent is bringing it up in a doctor's appointment, they already, they already have a feeling.
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Mm-hmm.
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And then they're told to wait and see and they're like, oh, well, is my feeling wrong?
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Right.
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They get they second guess'cause they're like, I'm not the expert.
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What, you know, so it can short circuit their beginning advocacy journey.
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Mm-hmm.
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And when you start to, even if you just start talking about the diagnosis, I think people automatically think, well I need a diagnosis to get this, this, and this.
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And we had, we had two years of services with no diagnosis, which that six months of that was, we were on a waiting list to have an evaluation.
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But what I found great was that I was like, he's autistic.
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We don't have a di he's autistic.
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We don't have the formal diagnosis, but like.
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Here's where we're at.
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And it did, his services didn't change at all.
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Once we had a formal diagnosis, most people, I don't think even cared.
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I was like, who wants the formal papers?
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And everyone's like, well, it doesn't really matter.
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Right.
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'cause you were already on that track.
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where those treatment approaches were set and you were following that path and I think it was great too, that we were.
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As one of his therapists, we were starting with where he was at.
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we had that approach of the follow his lead, but then we were also looking at him through this lens of neurodivergence saying, you know what?
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We all feel like autism is probably the right path.
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But we also know that by following his lead, doing some of those other things, like,'cause you would do the play project with me, which it's a parent coaching plan for.
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Autistic children are ages about two to six.
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And so it's the idea that parents are with the children most of the time.
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And so as me doing some like videography and stuff like that, like videotaping myself, interacting with Henry so that they have those models, and then videotaping Devin and, and Andrew as well, her husband, while they were interacting with Henry.
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And then we could just pick out the nuggets.
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Like, look at there, look what he did.
00:16:51.320 --> 00:16:57.919
Oh, he initiated, oh look, when you waited, you know, all these like different things that became this shared vocabulary.
00:16:57.950 --> 00:16:59.659
And so that was what we were talking about.
00:16:59.659 --> 00:17:04.430
It's like we had those approaches that didn't change when we got the official diagnosis, but yet.
00:17:05.275 --> 00:17:08.964
It was great to have that permission to be like, we believe he's neurodivergent.
00:17:08.970 --> 00:17:09.180
Mm-hmm.
00:17:09.259 --> 00:17:10.255
And we're gonna start there.
00:17:10.255 --> 00:17:18.625
We're not gonna, we're not gonna try an analytic language approach with him because that's not the way that he's thinking about language.
00:17:19.194 --> 00:17:23.704
And we did think and notice that, some of Henry's interest was music.
00:17:23.710 --> 00:17:24.039
Mm-hmm.
00:17:24.130 --> 00:17:27.634
Music what calmed him, music helped him engage with others.
00:17:27.694 --> 00:17:29.255
And it started with just nursing rhymes.
00:17:29.255 --> 00:17:32.855
But then the Mother Load hit Bubble Guppies.
00:17:32.974 --> 00:17:34.234
Bubble Guppies.
00:17:34.625 --> 00:17:39.184
And every Bubble Guppies episode is multiple songs.
00:17:40.115 --> 00:17:47.164
And he's hooked from the theme song until, like, each episode has, I think it has at least two or three songs.
00:17:47.164 --> 00:17:57.394
And he, I know the words to them all, but that was how we got him bought into like very basic AAC to start with.
00:17:57.394 --> 00:18:01.714
He had buttons that were bubble upy songs, so he would show interest, I think.
00:18:02.164 --> 00:18:04.295
The first thing we used had like eight buttons.
00:18:04.384 --> 00:18:04.505
Mm-hmm.
00:18:04.744 --> 00:18:12.664
And he, it was eight of his favorite songs and he was able to mostly at that point, use it to help regulate.
00:18:13.565 --> 00:18:20.404
But even now, like one of them was the Five Little duck song and we haven't played that at home much.
00:18:21.154 --> 00:18:30.875
But I put on some super simple songs and that song came on and he looked at me and he smiled and I was like, you remember the song?
00:18:30.964 --> 00:18:37.355
We've listened to this song a thousand times and Twinkle Twinkle Little Star is still.
00:18:37.400 --> 00:18:38.839
It still up there.
00:18:38.839 --> 00:18:38.930
Mm-hmm.
00:18:39.259 --> 00:18:42.430
On his list of all time calming tools.
00:18:43.420 --> 00:18:47.630
And then we were able to use some of the bubble guppies songs since we knew that he knew all of them.
00:18:47.630 --> 00:18:50.240
He found ways to be able to request certain episodes.
00:18:50.630 --> 00:18:55.859
But then there's some, bubble upy songs that are holiday related.
00:18:55.859 --> 00:18:58.650
There's some, so we would do them for the certain holidays.
00:18:58.859 --> 00:19:00.480
There's some, is it, it's time for lunch.
00:19:00.779 --> 00:19:01.440
Well, we would do that.
00:19:01.440 --> 00:19:01.890
What's time?
00:19:01.890 --> 00:19:03.089
Is it, it's time to go.
00:19:03.390 --> 00:19:06.315
And he would be like, alright, what time is it?
00:19:06.315 --> 00:19:06.875
That's not the words.
00:19:07.079 --> 00:19:07.710
What time is it?
00:19:07.710 --> 00:19:11.430
It's time to jump And we jump on the trampoline that he liked, or it's time to fall.
00:19:11.430 --> 00:19:12.809
And he thought that was great.
00:19:12.809 --> 00:19:15.119
And so it was this bridge for him.
00:19:15.269 --> 00:19:15.359
Mm-hmm.
00:19:15.809 --> 00:19:16.230
Yeah.
00:19:17.490 --> 00:19:27.509
so he speaks in scripts and most of his phrases for the first five years of his life came from Bubble Guppy episodes.
00:19:28.230 --> 00:19:32.690
A few toy story, a few in a toy story that was a short, that was a short phase.
00:19:33.434 --> 00:19:34.785
A phase that we missed when it left.
00:19:35.865 --> 00:19:46.545
But he would say a phrase and he would say it over and over, sometimes like unintelligible, until we figured out like, oh, that's from, it's from an episode.
00:19:46.875 --> 00:19:52.694
And we still, to this day, he will say things we're like, does that mean that you wanna watch that episode?
00:19:52.755 --> 00:19:53.954
Do you like that part?
00:19:53.954 --> 00:19:55.154
What does that mean?
00:19:56.085 --> 00:20:00.974
Like he, one of his most recent ones is gingerbread house, bread house.
00:20:01.005 --> 00:20:03.825
He will say,'cause it's an episode about a gingerbread house.
00:20:05.085 --> 00:20:12.704
And he, Christmas time, we got a shower curtain that had gingerbread houses on it and a tablecloth that had gingerbread houses on it.
00:20:12.914 --> 00:20:16.365
And he loved the gingerbread houses.
00:20:16.755 --> 00:20:20.894
So from the episode we thought he just meant he wanted to watch this episode'cause it was great.
00:20:20.894 --> 00:20:22.244
Christmas is fun.
00:20:22.545 --> 00:20:31.605
He just really likes gingerbread houses, which was very, it's just very interesting to see.
00:20:32.565 --> 00:20:33.615
And it takes us a while.
00:20:33.615 --> 00:20:38.295
Sometimes it takes us weeks to figure it out or for us to see like where his brain got to.
00:20:38.599 --> 00:20:38.950
Right.
00:20:39.000 --> 00:20:39.349
Right.
00:20:40.904 --> 00:20:41.174
Yep.
00:20:41.234 --> 00:20:52.115
And so that was another thing that we did is we did, we noticed that his language was developing in a different way through scripting, which is the, gestalt language processing, which we've talked about a little bit on the podcast before.
00:20:52.115 --> 00:21:06.644
And it's just the idea of children, instead of learning a single word like Mama and and then adding Mama Milk or Mama Go, or Mama Up, they have a whole chunk that they grab onto.
00:21:06.795 --> 00:21:15.154
And they might take something from an episode where, the Mama Tiger from Daniel Tiger says something like, I love you so much.
00:21:15.154 --> 00:21:17.434
You're so wonderful to, to Daniel Tiger.
00:21:18.005 --> 00:21:18.994
And gives him a hug.
00:21:18.994 --> 00:21:21.305
And he's like, when he says it, you're so wonderful.
00:21:21.335 --> 00:21:23.825
And it means, give me a hug, mama.
00:21:23.855 --> 00:21:25.865
You know, this is, that's from a different child.
00:21:25.865 --> 00:21:27.664
But the, I, that's the idea.
00:21:27.724 --> 00:21:27.815
Mm-hmm.
00:21:28.535 --> 00:21:33.694
And then that's what Devon is saying, doing some investigation to be like, first of all, is it, is it intelligible?
00:21:33.694 --> 00:21:34.565
Can we figure it out?
00:21:35.194 --> 00:21:37.444
And then also, what's the meaning behind it?
00:21:37.444 --> 00:21:39.484
'cause it's not always Exactly.
00:21:39.785 --> 00:21:43.085
Gingerbread house, bread house could be, I am so happy.
00:21:43.625 --> 00:21:46.835
It could be, let's go to where I can see them.
00:21:47.015 --> 00:21:48.299
It could be, let's go watch the episode.
00:21:48.519 --> 00:21:51.394
In the episode, they, it's the grump fish.
00:21:51.394 --> 00:21:54.275
So he's always grumpy and he's always talked about that guy too.
00:21:54.275 --> 00:21:55.144
And he loves Mr.
00:21:55.144 --> 00:21:55.714
Grump fish.
00:21:55.894 --> 00:22:00.785
But the end of the episode, they try and cheer him up and they turn his house into a gingerbread house.
00:22:00.815 --> 00:22:02.315
So at the end of the episode, Mr.
00:22:02.375 --> 00:22:06.694
Grump fish is laughing and he's happy and has friends and so.
00:22:07.654 --> 00:22:14.644
I think it often has different meanings, but sometimes it's like, I'm just happy and this is exciting and I'm in a good mood.
00:22:14.644 --> 00:22:20.375
And other times it's like, gingerbread houses are really cool, so I'm happy'cause gingerbread houses are cool and I like to look at them.
00:22:21.335 --> 00:22:23.279
So one phrase can have multiple meanings.
00:22:23.279 --> 00:22:23.440
Mm-hmm.
00:22:23.759 --> 00:22:24.605
Multiple intense.
00:22:25.535 --> 00:22:26.434
Well it is really cool.
00:22:26.434 --> 00:22:30.954
You've mentioned, the school district that it starts with Help me Grow, which is through the birth to three.
00:22:30.954 --> 00:22:37.194
And then he went into preschool and got an IEP and Alyssa Acker was his speech therapist there.
00:22:37.194 --> 00:22:38.424
And I gotta give a shout out to her.
00:22:38.424 --> 00:22:45.474
She's been on the podcast'cause she and I did a, we really got to understand Henry.
00:22:46.359 --> 00:22:51.309
As co-regulation, meaning that we like what help, what helps him in this school setting?
00:22:51.309 --> 00:22:52.720
What helps him at the clinic?
00:22:52.720 --> 00:22:54.009
And does that cross over?
00:22:54.009 --> 00:22:55.180
And some did, some didn't.
00:22:55.299 --> 00:22:58.029
And it was just so great to have that conversation with her.
00:22:58.400 --> 00:23:01.170
and then you had, you also, found, through St.
00:23:01.170 --> 00:23:02.460
Luke's, you did speech and OT.
00:23:02.460 --> 00:23:06.599
So you were talking about these resources you had even before the diagnosis.
00:23:06.789 --> 00:23:11.470
but what has been your experience with the resources in our community as a whole?
00:23:11.650 --> 00:23:17.650
Like, did you have others that once the diagnosis happened, do the things work together?
00:23:17.650 --> 00:23:22.180
Do you feel like we're all like locked in our own little rooms and we don't talk to each other?
00:23:22.480 --> 00:23:27.279
Like what, what works well and what needs improvement like that you've seen in your journey?
00:23:27.339 --> 00:23:33.309
I think that Duluth is very limited in our resources.
00:23:33.730 --> 00:23:36.549
there are kind of.
00:23:37.119 --> 00:23:41.200
Two different tracks that you seem to go on when you're given a diagnosis.
00:23:41.529 --> 00:23:51.490
Oftentimes an option given is a, b, a, and if you choose not to do a b, A, you kind of have to figure it out.
00:23:51.549 --> 00:23:55.519
And we chose not to do a, b, A, but we had already had OT in place.
00:23:55.579 --> 00:23:58.369
We already had speech at Mason, so we had speech at St.
00:23:58.369 --> 00:24:06.259
Luke's, so we had all the appointments and none of that changed when he got a diagnosis.
00:24:06.259 --> 00:24:09.140
But nothing was really added either.
00:24:09.650 --> 00:24:11.059
Uh, which was fine.
00:24:11.390 --> 00:24:29.480
We sought out a diagnosis in order to see what help we could get from the county, which we did through a MN choices assessment, which up to this point has been one of the most helpful things that we have done.
00:24:29.750 --> 00:24:36.079
And the assessor who came was fabulous and really explored.
00:24:36.934 --> 00:24:43.565
Our needs in our home and how that impacts kind of our daily living and left.
00:24:43.565 --> 00:24:54.904
And was like, you qualify for this and you're going to get a county worker and there's this program or this program and you can go from there.
00:24:55.115 --> 00:25:07.115
And so what we got out of that was me being able to be a paid caregiver because Henry hit a certain age, and he did start preschool and it was very, very difficult.
00:25:07.174 --> 00:25:13.835
He started with half day preschool and he went for three hours and some days very rarely we're okay.
00:25:14.315 --> 00:25:17.134
And a lot of days were really, really hard.
00:25:17.164 --> 00:25:21.994
And his school team, the sped team was amazing.
00:25:22.295 --> 00:25:23.944
They were amazing with him.
00:25:23.944 --> 00:25:28.535
They communicated with me so well and we probably changed his IEP.
00:25:30.109 --> 00:25:34.250
12 times his first year of preschool, adjusting times.
00:25:34.299 --> 00:25:35.950
we lessened his day.
00:25:36.210 --> 00:25:37.619
we extended his day.
00:25:37.619 --> 00:25:44.380
We went from full day preschool to what they call small group, and that's where we really like found his group.
00:25:44.380 --> 00:25:52.059
He went for an hour and a half and he typically got to be with his sped teacher and the speech therapist, sometimes another kiddo.
00:25:52.279 --> 00:25:57.829
so it was very, very small, very, very contained for a short amount of time.
00:25:58.069 --> 00:26:12.019
And so that, having that option was really, really great for him because all I want is for him to be in a place where he is happy and he's getting something out of it.
00:26:12.609 --> 00:26:14.769
and he was able.
00:26:15.474 --> 00:26:26.605
To experience being regulated in a new space in the school setting, which he was not getting in preschool because it's a classroom of 14 kids and he had a one-on-one para.
00:26:26.605 --> 00:26:29.484
He spent a lot of time with his special education teacher.
00:26:29.724 --> 00:26:37.134
He was often two-on-one in that larger classroom setting, and it just wasn't the right, it wasn't the right fit.
00:26:37.565 --> 00:26:40.325
so his school team was incredible.
00:26:40.325 --> 00:26:55.595
But something that made me feel like it went so well is that if I ever had a concern or I had a question or I brought something up, like I was in the driver's seat, I felt like I was in the driver's seat.
00:26:56.134 --> 00:26:59.464
and that they really cared about Henry.
00:26:59.525 --> 00:27:11.105
So the transition to kindergarten terrified me because we were losing Alyssa and we were losing Sarah, and we loved them two years of working with them.
00:27:11.329 --> 00:27:13.430
Yeah, they learned Henry so well.
00:27:13.430 --> 00:27:16.220
They learned how to manage me so well.
00:27:16.789 --> 00:27:36.829
but what was really great is that they helped with the transition by not only still being something that Henry saw at school as he was in kindergarten, but they talked to his new teacher and the new team and made sure they were all on the same page.
00:27:36.829 --> 00:27:38.720
Because Henry has a lot of needs.
00:27:38.720 --> 00:27:40.549
He has a lot of needs.
00:27:40.549 --> 00:27:41.660
He loves to wander.
00:27:41.660 --> 00:27:45.079
He doesn't wanna be where he is supposed to be.
00:27:45.109 --> 00:27:53.390
He really wants to do what Henry wants to do, which for the most part is fine.
00:27:54.230 --> 00:28:00.589
But it can be really challenging unless you're US parents.
00:28:00.619 --> 00:28:03.140
'cause we challenge Henry and we can say no.
00:28:03.140 --> 00:28:05.869
And it's a lot harder in the school setting to like.
00:28:06.244 --> 00:28:07.144
Set him off.
00:28:07.805 --> 00:28:07.984
Mm-hmm.
00:28:08.224 --> 00:28:10.055
Because it's a lot harder to calm him down.
00:28:10.085 --> 00:28:10.204
Mm-hmm.
00:28:11.434 --> 00:28:18.964
But the school, the school setting, and I've heard from a lot of other newer parents, like that's the part that's really scary.
00:28:19.025 --> 00:28:21.214
Nobody wants their kid to be excluded.
00:28:22.474 --> 00:28:27.305
They want their kid to, to get an education that they have the right to get.
00:28:27.815 --> 00:28:35.765
something that I think I approach a little bit differently is I am all about like, what is best for Henry.
00:28:36.454 --> 00:28:40.444
And I don't wanna say I don't care about inclusion, but I care about what's best for Henry.
00:28:40.444 --> 00:28:43.924
And is it best for him to be in a general ed classroom with a para?
00:28:44.075 --> 00:28:45.214
Absolutely not.
00:28:45.875 --> 00:28:48.365
He can't handle it at this point.
00:28:48.365 --> 00:28:49.835
He can't handle it yet.
00:28:50.194 --> 00:28:56.494
So for him to have the option to be in a smaller classroom with a teacher.
00:28:57.154 --> 00:29:08.494
With several paras, with less kids with access to a sensory space, with a flexible enough schedule that they can say, Oop, it's time to get Henry outside to regulate.
00:29:08.884 --> 00:29:18.934
that to me screams inclusion because everyone is doing what is best for Henry and including him in the community of the school.
00:29:19.670 --> 00:29:23.990
Because it's not the best for anybody to put Henry in a gen ed classroom and have him scream all day.
00:29:25.009 --> 00:29:25.309
Right?
00:29:25.309 --> 00:29:25.329
That's right.
00:29:25.384 --> 00:29:27.065
That's the individual part of it.
00:29:27.244 --> 00:29:27.335
Right.
00:29:27.335 --> 00:29:32.275
Because there are definitely some kids where, that's, we never want to hear, oh, this is what we do with everybody.
00:29:32.279 --> 00:29:32.410
Mm-hmm.
00:29:32.490 --> 00:29:37.914
You know, because that's, kind of a, flag that you could be like, mm, I can get my little self-advocacy thing out.
00:29:38.005 --> 00:29:45.295
'cause, but then also it's wonderful for you to hear that you worked with your team at school and you made changes.
00:29:45.295 --> 00:29:53.454
'cause sometimes we don't know what's gonna work and so you're like, well let's see if they can do, oh, we're gonna, okay, we're gonna do something different.
00:29:53.845 --> 00:29:56.095
And that was really cool to see too.
00:29:56.605 --> 00:29:58.194
And it, it has been great.
00:29:58.255 --> 00:30:02.815
'cause I know that not every child has a positive experience.
00:30:02.815 --> 00:30:13.015
I know the IEP process is arduous and scary and a lot goes into it and it, it's kind of terrifying.
00:30:13.644 --> 00:30:23.065
But I have never felt like Henry's IEP team has not listened to what I have said.
00:30:23.424 --> 00:30:27.384
And they have said to me like, you are, you're the expert.
00:30:27.384 --> 00:30:28.704
You know him best.
00:30:29.275 --> 00:30:29.875
That's great.
00:30:30.115 --> 00:30:30.234
Mm-hmm.
00:30:30.240 --> 00:30:34.944
And I love the, I the viewpoint of inclusion doesn't mean the same for everyone.
00:30:34.944 --> 00:30:38.305
Inclusion doesn't mean you're in a general ed classroom.
00:30:38.305 --> 00:30:43.644
Inclusion means what are you doing that's best for my child and getting their needs met.
00:30:44.095 --> 00:30:44.184
Mm-hmm.
00:30:44.424 --> 00:30:44.434
Mm-hmm.
00:30:44.575 --> 00:30:47.875
It's how, how are you helping my child be successful?
00:30:47.875 --> 00:30:47.884
Mm-hmm.
00:30:47.934 --> 00:30:51.575
And that's really where I want to make my voice heard.
00:30:51.575 --> 00:30:56.194
And I don't have to, I don't have to get loud at this point with the school team.
00:30:56.734 --> 00:30:59.644
And I tell my husband, I said, I'll save that for when I have to.
00:31:00.785 --> 00:31:04.974
But at this point We work very well together.
00:31:05.244 --> 00:31:07.345
And I think sometimes.
00:31:08.785 --> 00:31:11.964
Advocacy doesn't have to be loud.
00:31:12.174 --> 00:31:12.265
Mm-hmm.
00:31:12.505 --> 00:31:15.355
It doesn't have to be big or adversarial.
00:31:16.134 --> 00:31:18.144
And it doesn't have to be scary.
00:31:18.684 --> 00:31:18.894
Oh.
00:31:18.894 --> 00:31:21.265
Can you share the story about the bus driver?
00:31:21.325 --> 00:31:23.365
I love this example of advocacy.
00:31:23.394 --> 00:31:23.724
Yeah.
00:31:23.724 --> 00:31:33.924
So beginning of the school year, buses always have like route issues and difficulties getting every kid where they need to be, when they need to be.
00:31:33.924 --> 00:31:37.404
There's growing pains and thankfully we live very close to the school.
00:31:37.734 --> 00:31:39.684
so it, it's not an issue.
00:31:39.744 --> 00:31:44.634
We do transportation'cause it helps Henry transition away from like us and home.
00:31:45.144 --> 00:31:55.555
But the school year started and his morning bus driver, like the, that bus was set, but for the whole first week of school, Henry didn't have a bus home.
00:31:56.605 --> 00:32:02.035
And a couple days into school, his bus driver was like, Hey, does he have a bus home yet?
00:32:02.035 --> 00:32:02.634
And I was like.
00:32:03.099 --> 00:32:06.069
No, but it's fine.
00:32:06.400 --> 00:32:15.990
And he is like, well, let me look into that because I have time in my routes and I could bring him home.
00:32:16.589 --> 00:32:18.779
And I was like, huh, okay.
00:32:19.500 --> 00:32:24.809
But I think he just understood that like, this is a barrier for this kid.
00:32:24.809 --> 00:32:25.769
Let me check on that.
00:32:25.775 --> 00:32:25.924
Mm-hmm.
00:32:26.009 --> 00:32:27.630
Like, let me see what I can do.
00:32:28.230 --> 00:32:34.890
And I think it was the next day that his teacher was like, okay, we have a bus home.
00:32:34.890 --> 00:32:36.089
He is coming home at this time.
00:32:36.359 --> 00:32:38.339
And I was hoping it was that bus driver.
00:32:38.670 --> 00:32:39.299
and it wasn't.
00:32:39.299 --> 00:32:43.134
But then the next day he's like, so he is on a bus home now and good.
00:32:43.325 --> 00:32:43.615
Good.
00:32:43.615 --> 00:32:47.789
I feel like he, he just cares mm-hmm.
00:32:48.029 --> 00:32:48.779
About Henry.
00:32:49.079 --> 00:32:54.130
And I don't think he has any clue that he advocated for the needs of a.
00:32:54.690 --> 00:33:02.279
Kid who can't do that for himself or I don't know who to call at the bus company to say like, can we get my kid on a bus?
00:33:02.460 --> 00:33:02.549
Right.
00:33:03.240 --> 00:33:11.400
Uh, but he has, he was Henry's bus driver last year and he came back again this year and we just love him.
00:33:12.119 --> 00:33:13.109
He's out.
00:33:13.140 --> 00:33:20.250
'cause he had to have surgery, but then he was like, I'm gonna be out and like, oh please come back after I love, everything goes good.
00:33:20.250 --> 00:33:25.470
That's advocacy too, because he's letting you know so that you can let Henry know, oh, it's gonna be someone different.
00:33:25.470 --> 00:33:28.380
Just so you know, like heads up is the sometimes the best.
00:33:28.500 --> 00:33:30.240
And he told me who he was.
00:33:30.240 --> 00:33:35.490
Like that bus driver you had yesterday as the sub will be the bus driver and that will be the aide.
00:33:36.000 --> 00:33:37.170
So Henry's gotten bigger.
00:33:37.170 --> 00:33:40.859
So he's always been in a five point harness on the bus in the car seat.
00:33:40.920 --> 00:33:43.289
And the bus driver, this came from the bus driver.
00:33:43.289 --> 00:33:45.119
He's like, well, he's getting bigger.
00:33:45.119 --> 00:33:48.589
Do we have a plan for a, like car seat?
00:33:48.589 --> 00:33:50.690
And I was like, that's a good question.
00:33:51.019 --> 00:33:57.440
Like whatever we have to do, if I have to buy one of the like five point harnesses that can attach in.
00:33:57.440 --> 00:34:01.880
And he was like, well, are you okay if we try a seatbelt?
00:34:01.880 --> 00:34:05.000
And he's like, I'll talk to the teacher when we get to school.
00:34:05.000 --> 00:34:09.860
And, and then I checked in with the teacher, do we have to change anything in his IEP?
00:34:09.889 --> 00:34:13.219
But the bus driver's like, no, we can try the seatbelt.
00:34:13.610 --> 00:34:17.900
And then I, a couple days later, he's like, the seatbelt's been going great.
00:34:17.960 --> 00:34:18.079
Awesome.
00:34:18.440 --> 00:34:19.550
And it was all Dr.
00:34:19.579 --> 00:34:22.340
I'm like, I knew that was coming.
00:34:22.670 --> 00:34:22.849
Mm-hmm.
00:34:23.150 --> 00:34:25.429
But I was okay waiting.
00:34:25.429 --> 00:34:25.789
But he just did it.
00:34:25.789 --> 00:34:31.010
And he was like, yeah,'cause and it was the fall and he goes,'cause come winter, he's not gonna fit.
00:34:31.835 --> 00:34:35.704
In that, oh, like car seat five point harness anymore.
00:34:35.704 --> 00:34:37.054
And I was like, it's all the coats and everything.
00:34:37.054 --> 00:34:37.474
Oh yeah.
00:34:37.480 --> 00:34:37.750
Mm-hmm.
00:34:38.135 --> 00:34:43.054
And he was like, cool, if we use a seat belt, I'm like, yeah, I'm good.
00:34:43.835 --> 00:34:44.614
He's like, okay.
00:34:44.614 --> 00:34:46.295
Well I love that story.
00:34:46.295 --> 00:34:46.985
I love that.
00:34:46.985 --> 00:34:48.934
It's just such a heartwarming story.
00:34:48.934 --> 00:34:59.985
And I like how you say Devin that, um, advocacy doesn't have to be loud, but you are part of something that might get a little loud at times, which is very exciting.
00:34:59.985 --> 00:35:01.784
It's a new organization that you're part of.
00:35:01.815 --> 00:35:01.905
Mm-hmm.
00:35:02.204 --> 00:35:08.414
So I have a group of local moms.
00:35:08.414 --> 00:35:09.525
We have a group chat.
00:35:09.554 --> 00:35:18.034
And so we've really been able to connect, with moms clinic families and friends of friends who all have autistic kids.
00:35:18.344 --> 00:35:20.324
and something that.
00:35:21.405 --> 00:35:29.255
We were really sad to see happen was that the Autism Walk Northland, this past year, it was their final walk.
00:35:29.255 --> 00:35:32.255
The organizers were just ready to move on.
00:35:32.445 --> 00:35:41.295
and another mom in our group chat decided to reach out to them and was like, I want to, I wanna take that over.
00:35:41.804 --> 00:36:08.215
that morphed into her deciding to create a nonprofit that will be in charge of this event, but that has a bigger mission and vision to provide funding to families or teachers or school programs that serve autistic kids or the neurodivergent community, and to really fill like a monetary need in the community.
00:36:08.545 --> 00:36:09.474
and it's very new.
00:36:09.474 --> 00:36:13.014
It's very beginning stages at this point.
00:36:13.525 --> 00:36:18.684
But our goal is to raise money and to fill the need of the community.
00:36:18.715 --> 00:36:20.034
And that might change.
00:36:20.034 --> 00:36:23.155
Like we don't wanna say money is always gonna go to this.
00:36:23.155 --> 00:36:31.405
We want to be able to provide as much money to as many different needs as we can as they arise.
00:36:31.775 --> 00:36:34.925
and it's really cool to have met Taylor.
00:36:34.925 --> 00:36:38.385
She is the president of, Different, Not Less foundation.
00:36:38.804 --> 00:36:50.085
and what is really cool, honestly about meeting another autism mom is oftentimes you can click and not really have to like, I don't have to explain that.
00:36:50.085 --> 00:36:54.855
I have Henry and he doesn't speak and we have all of these challenges.
00:36:54.855 --> 00:36:58.155
Like that's already kind of like she gets it.
00:36:58.545 --> 00:37:01.425
You're already on that same, we're already on the same page.
00:37:01.574 --> 00:37:07.364
And what was really cool, in the first time I met Taylor, I was like, I feel like I've known you.
00:37:07.364 --> 00:37:08.804
We are vibing.
00:37:08.804 --> 00:37:09.704
We have.
00:37:10.320 --> 00:37:13.260
Very similar goals and very similar ideas.
00:37:13.710 --> 00:37:23.730
And just wanna help families like our own and kids like our own and the people who work with our kids.
00:37:24.090 --> 00:37:39.780
But also to provide awareness, to increase visibility of autistic kids and people and neurodivergent people in our community because our resources are so limited.
00:37:40.260 --> 00:37:45.750
And if we're not seeing a need, it's not going to be filled.
00:37:47.550 --> 00:37:49.530
I'm so excited for this organization.
00:37:49.530 --> 00:37:53.190
I think you guys are gonna do amazing things, and I just think about.
00:37:53.969 --> 00:37:59.809
You know how you said you can go ABA a or you can go other ways, but that other pathway isn't all that clear.
00:37:59.960 --> 00:38:00.110
Mm-hmm.
00:38:00.139 --> 00:38:08.420
And so for you, even just being here today and sharing your experience and your story, I'm sure we'll give so many people just guidance and what can I do?
00:38:08.420 --> 00:38:09.409
Where can I go?
00:38:09.710 --> 00:38:12.199
And, I think this foundation will do that for so many more.
00:38:12.650 --> 00:38:12.980
Mm-hmm.
00:38:13.489 --> 00:38:29.150
That's our hope is to honestly, to help as many people in the autistic community, our local autistic community, that we can, and it will start with the Autism Walk rebranded.
00:38:29.380 --> 00:38:40.119
this April, which we're very excited about, April is coming fast and so we are very busy trying to hammer out the details and don't know all of them yet.
00:38:40.119 --> 00:38:47.909
So it's a whirlwind starting this but it has been really cool to see how quickly.
00:38:48.224 --> 00:38:52.394
You can get a group of like-minded people to just do.
00:38:52.695 --> 00:38:53.385
That's awesome.
00:38:53.414 --> 00:38:54.224
That's so cool.
00:38:54.224 --> 00:38:54.284
Yeah.
00:38:54.284 --> 00:39:00.545
And so we'll definitely have a link to a way to contact the different, not less, organization.
00:39:00.875 --> 00:39:08.235
And, we'll be providing, definitely some, some links as we learn more about the autism walk 2026.
00:39:08.385 --> 00:39:08.474
Mm-hmm.
00:39:08.744 --> 00:39:18.954
And, and the rest of the things that you said that you're gonna be open to, that's the other thing that's so nice is that you're a community of like-minded, mostly moms, but not all there.
00:39:18.954 --> 00:39:23.244
There's a few different, there are moms, there are, professionals.
00:39:23.244 --> 00:39:29.505
We have a speech therapist on the board, we have OTs, we have, just community members.
00:39:29.815 --> 00:39:30.715
it's very cool.
00:39:30.715 --> 00:39:34.885
It's a very cool mix of people.
00:39:35.125 --> 00:39:44.954
Because while there is a lot of moms, we all have a very different background and we all have very different ideas and we all may have very different things that we want, to accomplish.
00:39:44.954 --> 00:39:52.190
But what's really cool about being on a board is that we can throw out all of our ideas and we get to vote on what we're gonna do.
00:39:52.815 --> 00:40:05.775
and while it can be scary to not know exactly like where we're going, like that's also really exciting because we have so many opportunities and so many different places we can go.
00:40:06.164 --> 00:40:08.625
I have so many things that I would like to do.
00:40:08.994 --> 00:40:17.454
so it's really cool to throw out oh, I would love for us to do this down the line or, and then have another mom say I would love to do this.
00:40:17.505 --> 00:40:22.514
and some of us have like specific places in mind where we would like to accomplish something.
00:40:22.994 --> 00:40:28.695
And something that I would love to see happen is I want communication boards at the parks in our city.
00:40:28.965 --> 00:40:29.324
Mm-hmm.
00:40:29.925 --> 00:40:32.985
And that's something, a dream of mine.
00:40:33.014 --> 00:40:34.364
I don't know if we will do that.
00:40:34.364 --> 00:40:36.974
I don't know if the foundation will do that, but that will forever, wait.
00:40:37.005 --> 00:40:45.414
Forever be a dream of mine because my kid struggles to communicate and he's not the only one.
00:40:45.414 --> 00:40:45.505
Right.
00:40:46.045 --> 00:41:02.034
I think in connecting with other moms locally, there are so many more kids that are autistic that struggle with communication, that aren't autistic, that struggle with communication, that have needs.
00:41:02.844 --> 00:41:07.255
That we don't have a way to fulfill them.
00:41:07.614 --> 00:41:07.704
Mm-hmm.
00:41:07.945 --> 00:41:10.224
I would also love to see fences at all of the parks.
00:41:10.224 --> 00:41:14.005
'cause I can't take Henry to a park and know that he'll be safe.
00:41:14.034 --> 00:41:15.014
'cause he likes to run.
00:41:15.855 --> 00:41:15.945
Mm-hmm.
00:41:15.945 --> 00:41:16.635
They're fast.
00:41:16.635 --> 00:41:17.925
Those little legs are fast.
00:41:18.344 --> 00:41:29.414
But there's, there's a lot of things that we could do with the funds that we raise and our goal is to honestly, raise as much money as we can to help as many people as we can.
00:41:29.954 --> 00:41:30.855
Mm-hmm.
00:41:31.094 --> 00:41:31.210
That's wonderful.
00:41:31.304 --> 00:41:32.085
That's really cool.
00:41:32.085 --> 00:41:39.795
And like you said, as you're, releasing your mission statement and that will be on there about how things are gonna be developing in the future.
00:41:39.795 --> 00:41:42.465
And so we just, yay guys.
00:41:42.465 --> 00:41:44.565
again, that's part of your self-advocacy group.
00:41:44.565 --> 00:41:48.744
You created a group of people, like-minded people, and then you decided what you're gonna do with it.
00:41:48.760 --> 00:41:49.269
Mm-hmm.
00:41:49.539 --> 00:41:50.320
That's really cool.
00:41:50.469 --> 00:41:59.500
And then can you tell me more about, we, we know a little bit about how you said that you found, you had like a, a group chat with some moms.
00:42:00.039 --> 00:42:03.789
How did you guy, how did you grab those people into your life?
00:42:03.849 --> 00:42:07.539
So I, this is two years ago now.
00:42:07.599 --> 00:42:13.659
I went way out of my comfort zone and I went to a caregiver retreat.
00:42:14.000 --> 00:42:18.829
it was a couple hours away from here in the woods, in the middle of nowhere.
00:42:19.789 --> 00:42:30.710
And I was so terrified and I was, I just kept telling myself at the very least, I like sit in my cabinet and I will read for three days and that will be great respite.
00:42:31.170 --> 00:42:35.010
and I met a group of moms.
00:42:35.010 --> 00:42:39.630
There are six of them, so there's seven of us total from all over the country.
00:42:40.050 --> 00:42:42.690
And one of the moms just kind of was like.
00:42:43.199 --> 00:42:50.420
You're coming with us and we clicked, after the retreat, we had a group chat together.
00:42:50.480 --> 00:42:53.510
We went on a couple of trips together.
00:42:53.809 --> 00:42:56.869
Since then, we have gotten tattoos together.
00:42:57.289 --> 00:43:05.659
and so when the retreat came up again, this, this year, I decided to go and most of those moms couldn't go.
00:43:05.949 --> 00:43:09.610
so I kind of was in the same boat, like put myself out there again.
00:43:09.610 --> 00:43:18.940
And this year we were kind of standing around and I heard somebody say Duluth, and I just was like, Duluth, I'm from Duluth, who is talking about Duluth.
00:43:19.460 --> 00:43:26.960
and I met two moms who are current clinic families, and connected with them and spent time with them.
00:43:27.050 --> 00:43:31.889
And the three of us started a little group chat, and then.
00:43:32.385 --> 00:43:35.324
One of them was like, well I know this mom, can I add her?
00:43:35.355 --> 00:43:39.014
And one of them was like, well, I know this person, can I add her?
00:43:39.014 --> 00:43:43.784
And then we were at the support group and there were more moms and we're like, Hey, let's add these people.
00:43:43.784 --> 00:43:47.894
And I think there's I think there's 10 moms in there now.
00:43:47.894 --> 00:43:52.215
So, um, a good collection of families from the clinic, from the support group.
00:43:52.215 --> 00:43:55.394
So we've mostly met each other in person.
00:43:55.675 --> 00:44:04.835
Taylor, who is the president and kind of the driving force behind, different, not less foundation was brought in'cause she knew one of the moms.
00:44:05.074 --> 00:44:09.485
and so it just kind, oh, we know you and you have an autistic kid, like, join.
00:44:09.844 --> 00:44:11.795
And it's just a, a group chat.
00:44:11.844 --> 00:44:12.804
some of us.
00:44:13.389 --> 00:44:15.309
We'll throw stuff out every day.
00:44:15.309 --> 00:44:18.969
Sometimes it is not related to autism.
00:44:18.969 --> 00:44:28.510
Sometimes it's just to commiserate sometimes, like just recently we all had a hey, sensory equipment, like what works when your kid is really dysregulated?
00:44:28.510 --> 00:44:29.769
I'm out of ideas.
00:44:30.050 --> 00:44:37.670
and it is really cool to have 10 different viewpoints or however, never thought of that.
00:44:37.820 --> 00:44:39.590
Or Ooh, I will try that.
00:44:39.590 --> 00:44:41.570
Or Ooh, can you send me a link for that?
00:44:41.940 --> 00:44:46.349
and it's really cool to just know, like they're always there.
00:44:46.349 --> 00:44:47.760
There's always the group chat.
00:44:48.090 --> 00:44:50.139
It's a great network, which is really cool.
00:44:50.139 --> 00:44:55.489
And that is where, several of the moms on the board for a different, now less foundation came from.
00:44:55.519 --> 00:45:02.449
'cause we maybe don't all know each other, but we all like have that connection.
00:45:02.789 --> 00:45:06.380
and it's really cool to be able to.
00:45:07.639 --> 00:45:12.469
Meet local moms after I kind of found my, my group, and they are my, my core group.
00:45:12.469 --> 00:45:16.429
Some of my very closest friends, uh, they're all over the country.
00:45:16.550 --> 00:45:17.840
The closest one is in St.
00:45:17.840 --> 00:45:19.940
Cloud and that's still a couple hours away.
00:45:20.360 --> 00:45:24.440
one of them is in New York, one of them is in South Carolina, one of them is in Chicago.
00:45:24.440 --> 00:45:26.000
One of them is in Kansas City.
00:45:26.239 --> 00:45:28.530
Another one is in, Wisconsin.
00:45:28.980 --> 00:45:30.510
So we're, we're all over.
00:45:30.900 --> 00:45:41.610
And what I think is really cool is that we've made a point to once or twice a year, we come together and we do some really cool, fun things.
00:45:41.610 --> 00:45:45.510
Like our next, our next trip we are going to New York.
00:45:46.110 --> 00:45:52.559
'cause our plan has been, we will go to where everybody lives so we can meet everybody's kids and families and see.
00:45:53.159 --> 00:45:54.960
Each other's lives.
00:45:55.019 --> 00:45:55.829
That's a great idea.
00:45:55.860 --> 00:45:57.300
which is really cool.
00:45:57.630 --> 00:46:14.440
we do a lot of FaceTimes, so we've all seen each other's kids, so each other's kids can, like, they know who we are and it's, it's really cool to have, they are my group of people that if I needed anything, they would drop everything.
00:46:14.739 --> 00:46:16.300
They are that group.
00:46:16.389 --> 00:46:21.010
When my dad passed in October, I very few words I needed to give.
00:46:21.010 --> 00:46:28.000
They knew what was going on, but they were from afar just the most supportive group of people.
00:46:28.300 --> 00:46:29.409
They never met my dad.
00:46:29.920 --> 00:46:30.610
Mm-hmm.
00:46:30.666 --> 00:46:31.715
they knew what you needed.
00:46:31.715 --> 00:46:35.795
They knew what I, and it was about just me, which was weird.
00:46:35.795 --> 00:46:36.635
They were like, how are you doing?
00:46:37.496 --> 00:46:43.166
but it is very cool that we were brought together because we all.
00:46:43.735 --> 00:46:46.045
Care for our children with disabilities.
00:46:46.376 --> 00:46:59.536
and it's not all autism, which is also very cool because being a caregiver, regardless of who you're caring for, is definitely challenging.?
00:47:00.956 --> 00:47:03.626
I love that support and advocacy go together.
00:47:04.115 --> 00:47:14.795
you're talking about how you found this core group of people that have similar backgrounds and yet very different backgrounds, different geographical areas, and in some ways that can expand.
00:47:15.695 --> 00:47:21.036
Your advocacy because they ha might have different programs that you've never heard of before.
00:47:21.246 --> 00:47:27.315
Different approaches, like you said, you're sending links and then bringing it down to the more local level.
00:47:27.585 --> 00:47:30.076
I'm so glad that you mentioned the autism support group.
00:47:30.076 --> 00:47:32.806
That happens the first Wednesday of the month at Masonic.
00:47:33.076 --> 00:47:38.775
There's other support groups out there online only right now the Masonic one is in person.
00:47:38.996 --> 00:47:40.405
but that wasn't always the case.
00:47:40.405 --> 00:47:41.650
You know, COVID and things like that.
00:47:41.650 --> 00:47:42.010
Mm-hmm.
00:47:42.090 --> 00:47:48.505
So things change and then, but then having some more group of people together, they're like, have you heard about this one?
00:47:48.505 --> 00:47:53.746
Or, Have you heard about this new therapist or this new playground that has a fence?
00:47:53.746 --> 00:48:01.396
You know, that's how I found about some things like that is like a, a parent told me, you know, and so then I send it out to everybody else.
00:48:01.396 --> 00:48:05.686
It's something that has been really cool on my journey as an advocate.
00:48:05.686 --> 00:48:06.766
Like I didn't choose it.
00:48:06.916 --> 00:48:11.806
I have a child with a disability, so I am an advocate whether I want to be or not.
00:48:12.195 --> 00:48:16.905
and it kind of took meeting my six Moon Beach mamas, we met at a place called Moon Beach.
00:48:17.115 --> 00:48:18.226
Our tattoo is a moon.
00:48:18.706 --> 00:48:27.885
it took meeting them to find my stride and be able to find my voice because in our group I'm the quiet one.
00:48:28.755 --> 00:48:31.485
And I remember meeting them'cause they knew each other.
00:48:31.485 --> 00:48:36.795
I kind of, they absorbed me and I was pretty quiet.
00:48:36.976 --> 00:48:40.166
And I remember the first time I kind of really started talking and.
00:48:40.590 --> 00:48:42.871
One of'em looked at me and was like, oh, you do speak.
00:48:45.210 --> 00:48:47.971
Which is wild'cause I'm very talkative.
00:48:47.971 --> 00:49:04.610
I could talk about advocacy and Henry and our journey all day long, but it took meeting my group of people to realize that if I don't say anything, nobody knows what I have to say.
00:49:05.001 --> 00:49:05.210
Right.
00:49:05.931 --> 00:49:12.481
And it's different, the local group chat with the, the moms I've met here in Duluth.
00:49:13.380 --> 00:49:17.791
I am one of the moms who's been on the journey the longest.
00:49:17.791 --> 00:49:25.590
Like Henry is, is older, if not the oldest, out of kind of the moms we have in our group chat.
00:49:25.590 --> 00:49:33.840
And some of them are just fresh starting out on their journey and something the therapist in me really loves.
00:49:34.186 --> 00:49:39.976
And wants to do is provide support because starting out in the journey, I didn't have that.
00:49:40.425 --> 00:49:42.195
I also didn't think I needed that.
00:49:42.646 --> 00:49:46.456
But when I found it, I didn't realize how much I did need it.
00:49:47.476 --> 00:50:06.195
And it's, it's been very cool to have to equally important support systems where I play such a very different role, which just highlights advocacy and how cool it can be is that you don't always have to be the loudest.
00:50:06.286 --> 00:50:08.175
Sometimes you're the one that doesn't speak.
00:50:08.806 --> 00:50:18.255
Sometimes you might have the most to say and don't know how to say it, but maybe somebody else in the group will help or somebody else can be the voice.
00:50:18.536 --> 00:50:26.965
something that's cool about our local group is like, there have been so many friendships, not just like support because we're autism moms.
00:50:26.965 --> 00:50:32.815
There's genuine friendships because I truly have love and respect for them.
00:50:33.206 --> 00:50:40.405
One because I understand their journey and how difficult it is, but two, because we're just a really cool bunch of moms.
00:50:40.405 --> 00:50:56.936
Everybody has such different backgrounds and it's so interesting to see we have all come from somewhere so different, but we have this major thing in common that makes none of the rest of it matter all that much.
00:50:57.565 --> 00:51:00.266
And so it's very, it's been very, very cool.
00:51:00.565 --> 00:51:11.126
And so Masonic has really been the start of our journey and when Henry graduated from his two years, we were so sad and I was like, what are we gonna do?
00:51:11.576 --> 00:51:16.615
And we actually, um, kind of weasel our way back in.
00:51:16.675 --> 00:51:29.275
He's had an a, a c device for years and years and Jillian, who is phenomenal with a, a c devices, was like, I do consulting and like, let's figure out if there's something we can do.
00:51:30.356 --> 00:51:31.706
To help it go better.
00:51:32.005 --> 00:51:36.896
And we, so the reason why is because you were at the, you were at a, a meeting.
00:51:36.896 --> 00:51:37.226
Mm-hmm.
00:51:37.646 --> 00:51:46.826
And so we were, we did this GLP class, and so we invited Devin in because we knew that from Henry's past that he's A GLP, that's how he learns his language.
00:51:46.856 --> 00:51:55.655
And so we invited her in and we did all this training for a group of moms, and then she saw another child with a different, software program.
00:51:55.686 --> 00:51:55.775
Mm-hmm.
00:51:56.045 --> 00:52:01.556
And she, this mom was just sharing what she's been, what she, programmed on the device and how her child was using it.
00:52:01.735 --> 00:52:07.226
Now, every child is different, but Devon was looking at it and going, I want that.
00:52:07.465 --> 00:52:11.186
Well, well, not just that, but it was because it made sense to you.
00:52:11.186 --> 00:52:14.965
But more than that, you're like, oh, I could see Henry loving this.
00:52:15.085 --> 00:52:15.175
Mm-hmm.
00:52:15.505 --> 00:52:24.326
I could see the predictability of the motor plan being something that he needs because you had given two and a half years, almost three years to this other system, he was using it.
00:52:24.505 --> 00:52:26.786
But we know that it was.
00:52:27.655 --> 00:52:29.036
At a stagnant.
00:52:29.126 --> 00:52:29.456
Mm-hmm.
00:52:29.876 --> 00:52:30.235
Right.
00:52:30.326 --> 00:52:32.996
He was using it in couple different ways.
00:52:33.445 --> 00:52:36.626
And you were modeling without, you know, without expectation.
00:52:36.626 --> 00:52:44.396
You were doing all of the things that we, that we, that therapists tell you, and you're like, oh, maybe this is what he can do.
00:52:44.396 --> 00:52:48.121
And then you're like, no, no, that's not, that's not what we want.
00:52:48.121 --> 00:52:49.945
That's not the message we wanna be sending.
00:52:49.945 --> 00:52:54.746
And so Jillian was part of the GLP group and she's like, we do consulting.
00:52:54.806 --> 00:52:56.335
And then here, go ahead, take it away.
00:52:56.335 --> 00:53:05.876
I just wanna make sure you look that well, and from the minute we got the new device with this new program, like Henry looked at it and attended to it instantly.
00:53:06.505 --> 00:53:10.976
And the first night it was at home, I just kind of set it on the counter, like, we'll have it.
00:53:11.306 --> 00:53:13.706
Um, he's very food driven.
00:53:13.976 --> 00:53:18.146
The kitchen is our favorite space, so it all, it all kind of starts with food.
00:53:18.505 --> 00:53:22.315
Um, and I started modeling and I was like, eat.
00:53:22.405 --> 00:53:25.076
And he was like, all mom, move your hands.
00:53:25.106 --> 00:53:25.885
Get out of the way.
00:53:26.215 --> 00:53:32.396
And he pressed chips and pizza and a whole bunch of things.
00:53:32.396 --> 00:53:34.585
I'm like, oh, okay.
00:53:35.126 --> 00:53:40.496
But then, I don't know, maybe three days into it, he, it was on the counter.
00:53:40.496 --> 00:53:47.246
We kind of keep it, the counter works well'cause it's eye level and he always notices it and he's very interested in it.
00:53:47.576 --> 00:54:00.865
And he was looking at things and he, I pushed eat and he went apple juice, juice box, apple juice, juice box.
00:54:01.465 --> 00:54:02.065
And I said.
00:54:02.666 --> 00:54:03.115
Okay.
00:54:03.596 --> 00:54:05.786
We don't have any of those, but like we can get some.
00:54:05.786 --> 00:54:08.936
And then he was like, pizza with pepperoni.
00:54:09.865 --> 00:54:14.456
And that's three separate, it goes to three separate pages.
00:54:14.485 --> 00:54:15.865
It was predictive.
00:54:16.255 --> 00:54:19.615
And he, pizza with pepperoni is one of his favorite foods.
00:54:20.076 --> 00:54:21.786
he also loves tacos.
00:54:21.786 --> 00:54:29.166
So the other night he was looking at his device and he pushed salad and he does like salad, but he was like, salad.
00:54:29.195 --> 00:54:32.045
And he picked salad because he likes the lettuce and the tacos.
00:54:32.045 --> 00:54:37.115
And then he kept looking and he found tacos and he's like, tacos, tacos, tacos, tacos, tacos, tacos.
00:54:37.896 --> 00:54:41.016
And it has been very, very cool.
00:54:41.405 --> 00:54:47.496
And it, like, I get very emotional because for six years we didn't know what was in his head.
00:54:48.036 --> 00:54:59.195
We, we know that there is a lot in his head, but to watch him independently be able to tell us something that he wanted.
00:55:00.905 --> 00:55:03.365
And know for a fact that that's what he wanted.
00:55:03.365 --> 00:55:05.945
He can say words, he has words.
00:55:06.275 --> 00:55:09.186
they often don't have the meaning that you think they would.
00:55:09.186 --> 00:55:12.335
So when he says cheeseburger, that might mean cheeseburger.
00:55:12.335 --> 00:55:14.175
Or it might mean I'm hungry.
00:55:14.536 --> 00:55:18.505
Or it might mean I want to like go in the car and drive by McDonald's.
00:55:18.835 --> 00:55:21.536
So you're still playing detective all the time.
00:55:21.565 --> 00:55:32.451
But to have him just independently be able to, even if right now it is just requesting food, he gets very spicy and he's like, orange, orange, orange, orange.
00:55:32.476 --> 00:55:33.496
And it's independent.
00:55:33.501 --> 00:55:33.650
Mm-hmm.
00:55:33.731 --> 00:55:34.365
And that's the big thing.
00:55:34.365 --> 00:55:34.456
Mm-hmm.
00:55:34.505 --> 00:55:47.096
when he started his journey and almost all kids who start their a c journey, it starts with modeling, meaning that we're doing the navigation for them, we're going to the page that they need, we're trying to do things that they like, like he the buy-in of the music.
00:55:47.155 --> 00:55:48.476
And this time he's like.
00:55:48.530 --> 00:55:49.905
no, no, no, I got this.
00:55:49.905 --> 00:55:50.835
And he's doing it himself.
00:55:50.835 --> 00:55:52.576
And that's really a cool thing.
00:55:52.606 --> 00:55:59.115
Well and what is really cool is he's always responded better to the pictures of the actual thing, the actual place.
00:55:59.115 --> 00:56:06.976
And it is the icons for all of the foods and he knows what they are and he is picking them from the icons, which is really helpful.
00:56:06.976 --> 00:56:14.385
'cause with his old device, I had to, I tried, tried to take pictures of a lot of things to try and increase his attention to it.
00:56:14.596 --> 00:56:25.516
And something else that was really cool is I was very open with the school team and I said, we're gonna try all this new device and it's gonna come to school with him and we're gonna see how it goes.
00:56:25.996 --> 00:56:31.436
And after the first day, his school speech therapist was like, we love this.
00:56:31.795 --> 00:56:32.036
Nice.
00:56:32.815 --> 00:56:39.025
'cause the motor planning just for us adults makes so much sense.
00:56:39.536 --> 00:56:42.476
And I told my husband as we were.
00:56:42.896 --> 00:56:45.416
Going through this switch to trial, something new.
00:56:45.416 --> 00:56:59.786
I'm like, this is purely selfish on my point because the old device was so hard for me to navigate and I'm like, I can't model and expect him to learn if I have no idea after three years what I'm doing.
00:57:00.626 --> 00:57:00.956
Right.
00:57:00.956 --> 00:57:00.965
Right.
00:57:01.010 --> 00:57:02.425
And it's so interesting too.
00:57:02.425 --> 00:57:17.710
And that's what's so nice about the AAC world too, is that when you get a device funded, it is probably for supposed to be for three to five years, but think about your phone three to five years for technology and is mm-hmm.
00:57:18.266 --> 00:57:19.076
A century.
00:57:19.405 --> 00:57:26.045
And then also, every software system has its own evidence-based, like they're doing research and things like that.
00:57:26.045 --> 00:57:32.255
So this was a different approach that is research-based that seems to be working.
00:57:32.255 --> 00:57:32.266
Mm-hmm.
00:57:32.331 --> 00:57:32.891
It's so exciting.
00:57:32.951 --> 00:57:33.530
That's very cool.
00:57:33.530 --> 00:57:33.541
Mm-hmm.
00:57:34.911 --> 00:57:42.271
thank you so much for coming and sharing Henry with us and also the new journey with different, not less.
00:57:42.510 --> 00:57:55.661
And please, listeners, follow that link and see what's going on in that community and know that we also have our autism support meetings every first Wednesday of every month at from four to five 30.
00:57:56.050 --> 00:57:57.536
And yeah.
00:57:57.536 --> 00:58:00.340
And those are posted on our website and our social media too.
00:58:00.340 --> 00:58:00.610
Yeah.
00:58:00.670 --> 00:58:00.760
Mm-hmm.
00:58:01.150 --> 00:58:06.061
So thank you so much for sharing your journey, your self-advocacy journey, and what you're doing.
00:58:06.150 --> 00:58:06.420
Yeah.
00:58:06.481 --> 00:58:07.556
Thank you for having me.
00:58:09.884 --> 00:58:11.893
That wraps up this episode of Hear Me Out.
00:58:12.313 --> 00:58:13.574
Thanks so much for listening.
00:58:13.844 --> 00:58:24.103
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00:58:25.708 --> 00:58:36.028
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00:58:36.449 --> 00:58:39.869
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00:58:40.889 --> 00:58:44.849
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