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

Hosts Niki Lampi and Tamara Pogin sit down with Devon Maycock for a meaningful conversation centered on autism, advocacy, and building stronger support systems for families. Devon shares insight into the lived experiences of families navigating autism, the importance of community connection, and the need for spaces that truly embrace and celebrate neurodiversity.

The episode highlights how collaboration between clinicians, caregivers, and local organizations can create real, lasting impact—and why awareness alone isn’t enough without action and inclusion.

A key focus of the conversation is the upcoming Autism Walk with the Different Not Less Foundation, bringing the Northland community together on April 26 at the DECC to raise awareness, foster connection, and support families in a visible, meaningful way.

Transcript

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Hello and welcome to Hear Me Out, the official podcast of the Masonic Children's Clinic for Communication Disorders. 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. 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. 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. And we are your hosts. We're so glad you're here. welcome. 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. Devin has a background in social work and is a fierce advocate for her son and for others with disabilities. She is here to share her story and talk about how we can all advocate for others through simple everyday interactions. Hi Devin. Hi. Hi, Devin. So I wanted to be upfront. Uh, I got to work with your son. I was his therapist for two years and it was a wonderful, rewarding experience that we took on together as a journey. And it was, it was a big regulation before communication journey. It was trying so many new things. He taught us both a lot, a think a lot, a lot. And that we could find, play anywhere with anything. Mm-hmm. So I really, yeah, he was definitely a good teacher. Mm-hmm. Yeah. Spatulas that point in time. Spatulas were the thing, well, what was the spatulas He used to carry on a spatula. And the end, if it has like the spot where you can hang it, he liked to stick his fingers and just wiggle it. Oh. And watch. Mm-hmm. The wiggle and feel the weight of it. And. Honestly kind of inspect and figure out like, oh, why does it wiggle like that and what's it doing? 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. He'd like the sound. I thought it was interesting that you mentioned he liked the weight because the weight differential from the handle to the rubber part. And he was just such a little scientist with it. But then he so much enjoyed when we understood the joy he got from it. Mm-hmm. And then you guys started getting spatulas for presents in his favorite colors. Christmas this year was a Mickey Mouse pancake flipper and a mini mouse pancake flipper. And they're like the perfect size and weight. So we just randomly see like, so cool a Mickey spatula. Pop up in the house and they, and he has other interests that you definitely also encouraged and, and followed those interests as well. Because at the clinic care we definitely, say follow the child's interests. Follow their lead. And that was something that you definitely became a pro at as well. Well, I love how you said, you know, when he realized that you could find the joy in it with him. Mm-hmm. 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. 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. And I love that you facilitated that with him. And something that Henry has always been really good at is self advocating. He. Doesn't speak, he uses gestures, but if he is like that, ain't it? Mm-hmm. You will know. And he's like, mm-hmm. I will not play with that toy. I will not do it that way. Like, we're gonna do it my way. Which very quickly taught Andrew and I like, just go with it. Like who cares what he plays with. He, for the first four years of his life, his comfort item was a little pink cup. The pink cup went everywhere. He slept with it. He took baths with it. It went to school with him. It was the thing to the point where the first time we lost it and didn't have a backup. Oh, we panicked. That was hard. Yeah. And then I panicked, bought several more backups, and then shortly after we had. Five or six pink cups. He was like, I'm all done with that. All done with that. Oh no. Yeah. 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. Mm-hmm. 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. So it was a tube that was collapsible and, and you could put together kinda like an accordion tube. 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. I'll take it. But then he's like, wait, you need one? So he'd give me the other one. Oh. 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. I'm not gonna do that, but I'm watching you. And then in a few minutes later, he'd be like, that thing you were doing. You know, and he'd either like, show me somehow or he'd do it himself. Not for very long, but then I'd be like, oh, we gotta do it up here. And he didn't wanna do it up there. He wanted me to do it up. Mm-hmm. It just things like that, that you're thinking, what does that mean? It means that he's getting his point across. 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. 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. 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. And he has not really cared to have her around. He, he will leave the room, but now like she's figured out. How to, I don't just get it, get in with him. 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. And that means that he wants her to like tickle him. And then that turns into Chase. And one of the first days that this happened, they played together doing that for an hour. Wow. And Henry doesn't hardly do things for, I don't, two or three minutes sometimes, but he was just loving it. And he, after that was the most calm, regulated, happy. Like Andrew and I just kind of looked at each other and were like, she's going to be his favorite person. Yeah. That's so sweet. And he, for the first several years of Fiona's life, he's like. Eh, it, there's, she's not doing anything. She's just sitting there. That's the thing. Yeah. Well, that leads us to Yeah, your history and things like that. So tell us how your story began and how you found your way to the Masonic Children's Clinic. So, I have a master's degree in social work. 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. Um, so I was very interested in that very early on in my professional career. 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. Um, it was also, he was nine months old when COVID hit. And so then we went through a, well, we're not leaving the house. He's not having interactions outside of our home. How much is that kind, kind of trying to rationalize what we were seeing and what I was seeing. Right. 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. Would copy some words. but at 15 months the words stopped. 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. And so he was, he was 15 months old when I was like, here's, here's what's up. And again, COVID. So we waited and there wasn't really much we could do. was anyone seeing kids for evaluations at that time? I, at that time didn't even start looking into evaluations. 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. See what happens. which we waited a while for that. I think Henry was two and a half before we really did much of anything. You're told wait and see. 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. I don't know. we'll just see if it's COVID related, if things will change. and so Henry was maybe not quite two and a half. 'cause we did help me grow services for about nine months. we started in September when he was two and he turned three in June. and Help me Grow was an amazing program. His evaluation was great. Um, he qualified in all areas, but he was really challenging to work with and I could tell that for. For his teacher. It was very challenging and I felt that I wasn't getting what I thought I wanted out of things. And at that point I was not, I would say I was not the advocate that I am now. And I was like, well, and it is what it is. And I'm from Duluth and so I've always known of the Scottish Right Clinic. And Masonic came up in one of our Help Me Grow sessions. 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. 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. Masonic was kind of our. Like, I like to say, that was our start. That was the start of our journey. So when he was in Help Me Grow, did they mention autism to you at that time, or did were you thinking that? I mentioned ti. Okay. The evaluation with the evaluator, she was great. And I was like, so we're gonna, I'm gonna throw out autism. And she's like, well, we don't wanna talk about labels and da da. And I was like, well, I do. I was like, here's what I'm seeing. And she's like, well, he's gonna qualify for services. Mm-hmm. Regardless of what the need is. and everybody, I think there's this sense, everyone's like, well, you need a diagnosis to get services. And that's absolutely not true. We have every single service now that we started when he was really little, minus helped me grow. He grew out of that. And we didn't have a diagnosis. We didn't need a diagnosis. What we needed was a doctor. To, to say, okay, I will put in this referral for speech and ot. Okay. So he just needed the doctor part to get started to demonstrate the need. That's, and then of course, at the Masonic Children's Clinic, you just, again, we just needed to demonstrate need. We don't need a diagnosis to, to serve, and then help me grow. They just need to demonstrate need as well. And that's why sometimes they're also sometimes a little reticent to be, to throw a label on it. Mm-hmm. And, and that can be, that can be good, but it can also be for our artistic children. 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. and then Masonic and some other places. but then there's almost like, there's this wall. That happens. 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. Or all of the extra things you do need a diagnosis. And it, it can be really scary to get the diagnosis piece. And I think a lot of new parents, like I was one, hold on to the, well, we don't have a diagnosis. It's okay. Mm-hmm. Like we can wait, we can wait and see. 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. doctors and providers often do say, wait and see. Mm-hmm. And sometimes that might work out, but it. What I think that does is just causes parents to second guess their gut feeling. Because if a parent is bringing it up in a doctor's appointment, they already, they already have a feeling. Mm-hmm. And then they're told to wait and see and they're like, oh, well, is my feeling wrong? Right. They get they second guess 'cause they're like, I'm not the expert. What, you know, so it can short circuit their beginning advocacy journey. Mm-hmm. 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. 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. But what I found great was that I was like, he's autistic. We don't have a di he's autistic. We don't have the formal diagnosis, but like. Here's where we're at. And it did, his services didn't change at all. Once we had a formal diagnosis, most people, I don't think even cared. I was like, who wants the formal papers? And everyone's like, well, it doesn't really matter. Right. 'cause you were already on that track. where those treatment approaches were set and you were following that path and I think it was great too, that we were. As one of his therapists, we were starting with where he was at. 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? We all feel like autism is probably the right path. 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. Autistic children are ages about two to six. And so it's the idea that parents are with the children most of the time. 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. And then we could just pick out the nuggets. Like, look at there, look what he did. Oh, he initiated, oh look, when you waited, you know, all these like different things that became this shared vocabulary. And so that was what we were talking about. It's like we had those approaches that didn't change when we got the official diagnosis, but yet. It was great to have that permission to be like, we believe he's neurodivergent. Mm-hmm. And we're gonna start there. 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. And we did think and notice that, some of Henry's interest was music. Mm-hmm. Music what calmed him, music helped him engage with others. And it started with just nursing rhymes. But then the Mother Load hit Bubble Guppies. Bubble Guppies. And every Bubble Guppies episode is multiple songs. And he's hooked from the theme song until, like, each episode has, I think it has at least two or three songs. 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. He had buttons that were bubble upy songs, so he would show interest, I think. The first thing we used had like eight buttons. Mm-hmm. And he, it was eight of his favorite songs and he was able to mostly at that point, use it to help regulate. But even now, like one of them was the Five Little duck song and we haven't played that at home much. 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? We've listened to this song a thousand times and Twinkle Twinkle Little Star is still. It still up there. Mm-hmm. On his list of all time calming tools. And then we were able to use some of the bubble guppies songs since we knew that he knew all of them. He found ways to be able to request certain episodes. But then there's some, bubble upy songs that are holiday related. There's some, so we would do them for the certain holidays. There's some, is it, it's time for lunch. Well, we would do that. What's time? Is it, it's time to go. And he would be like, alright, what time is it? That's not the words. What time is it? It's time to jump And we jump on the trampoline that he liked, or it's time to fall. And he thought that was great. And so it was this bridge for him. Mm-hmm. Yeah. so he speaks in scripts and most of his phrases for the first five years of his life came from Bubble Guppy episodes. A few toy story, a few in a toy story that was a short, that was a short phase. A phase that we missed when it left. 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. And we still, to this day, he will say things we're like, does that mean that you wanna watch that episode? Do you like that part? What does that mean? Like he, one of his most recent ones is gingerbread house, bread house. He will say, 'cause it's an episode about a gingerbread house. And he, Christmas time, we got a shower curtain that had gingerbread houses on it and a tablecloth that had gingerbread houses on it. And he loved the gingerbread houses. So from the episode we thought he just meant he wanted to watch this episode 'cause it was great. Christmas is fun. He just really likes gingerbread houses, which was very, it's just very interesting to see. And it takes us a while. Sometimes it takes us weeks to figure it out or for us to see like where his brain got to. Right. Right. Yep. 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. 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. And they might take something from an episode where, the Mama Tiger from Daniel Tiger says something like, I love you so much. You're so wonderful to, to Daniel Tiger. And gives him a hug. And he's like, when he says it, you're so wonderful. And it means, give me a hug, mama. You know, this is, that's from a different child. But the, I, that's the idea. Mm-hmm. And then that's what Devon is saying, doing some investigation to be like, first of all, is it, is it intelligible? Can we figure it out? And then also, what's the meaning behind it? 'cause it's not always Exactly. Gingerbread house, bread house could be, I am so happy. It could be, let's go to where I can see them. It could be, let's go watch the episode. In the episode, they, it's the grump fish. So he's always grumpy and he's always talked about that guy too. And he loves Mr. Grump fish. But the end of the episode, they try and cheer him up and they turn his house into a gingerbread house. So at the end of the episode, Mr. Grump fish is laughing and he's happy and has friends and so. 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. 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. So one phrase can have multiple meanings. Mm-hmm. Multiple intense. Well it is really cool. You've mentioned, the school district that it starts with Help me Grow, which is through the birth to three. And then he went into preschool and got an IEP and Alyssa Acker was his speech therapist there. And I gotta give a shout out to her. She's been on the podcast 'cause she and I did a, we really got to understand Henry. As co-regulation, meaning that we like what help, what helps him in this school setting? What helps him at the clinic? And does that cross over? And some did, some didn't. And it was just so great to have that conversation with her. and then you had, you also, found, through St. Luke's, you did speech and OT. So you were talking about these resources you had even before the diagnosis. but what has been your experience with the resources in our community as a whole? Like, did you have others that once the diagnosis happened, do the things work together? Do you feel like we're all like locked in our own little rooms and we don't talk to each other? Like what, what works well and what needs improvement like that you've seen in your journey? I think that Duluth is very limited in our resources. there are kind of. Two different tracks that you seem to go on when you're given a diagnosis. 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. And we chose not to do a, b, A, but we had already had OT in place. We already had speech at Mason, so we had speech at St. Luke's, so we had all the appointments and none of that changed when he got a diagnosis. But nothing was really added either. Uh, which was fine. 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. And the assessor who came was fabulous and really explored. Our needs in our home and how that impacts kind of our daily living and left. 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. 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. He started with half day preschool and he went for three hours and some days very rarely we're okay. And a lot of days were really, really hard. And his school team, the sped team was amazing. They were amazing with him. They communicated with me so well and we probably changed his IEP. 12 times his first year of preschool, adjusting times. we lessened his day. we extended his day. We went from full day preschool to what they call small group, and that's where we really like found his group. 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. so it was very, very small, very, very contained for a short amount of time. 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. and he was able. 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. He spent a lot of time with his special education teacher. He was often two-on-one in that larger classroom setting, and it just wasn't the right, it wasn't the right fit. so his school team was incredible. 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. and that they really cared about Henry. 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. Yeah, they learned Henry so well. They learned how to manage me so well. 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. Because Henry has a lot of needs. He has a lot of needs. He loves to wander. He doesn't wanna be where he is supposed to be. He really wants to do what Henry wants to do, which for the most part is fine. But it can be really challenging unless you're US parents. 'cause we challenge Henry and we can say no. And it's a lot harder in the school setting to like. Set him off. Mm-hmm. Because it's a lot harder to calm him down. Mm-hmm. 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. Nobody wants their kid to be excluded. They want their kid to, to get an education that they have the right to get. something that I think I approach a little bit differently is I am all about like, what is best for Henry. And I don't wanna say I don't care about inclusion, but I care about what's best for Henry. And is it best for him to be in a general ed classroom with a para? Absolutely not. He can't handle it at this point. He can't handle it yet. So for him to have the option to be in a smaller classroom with a teacher. 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. that to me screams inclusion because everyone is doing what is best for Henry and including him in the community of the school. Because it's not the best for anybody to put Henry in a gen ed classroom and have him scream all day. Right? That's right. That's the individual part of it. Right. Because there are definitely some kids where, that's, we never want to hear, oh, this is what we do with everybody. Mm-hmm. You know, because that's, kind of a, flag that you could be like, mm, I can get my little self-advocacy thing out. 'cause, but then also it's wonderful for you to hear that you worked with your team at school and you made changes. '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. And that was really cool to see too. And it, it has been great. 'cause I know that not every child has a positive experience. I know the IEP process is arduous and scary and a lot goes into it and it, it's kind of terrifying. But I have never felt like Henry's IEP team has not listened to what I have said. And they have said to me like, you are, you're the expert. You know him best. That's great. Mm-hmm. And I love the, I the viewpoint of inclusion doesn't mean the same for everyone. Inclusion doesn't mean you're in a general ed classroom. Inclusion means what are you doing that's best for my child and getting their needs met. Mm-hmm. Mm-hmm. It's how, how are you helping my child be successful? Mm-hmm. And that's really where I want to make my voice heard. And I don't have to, I don't have to get loud at this point with the school team. And I tell my husband, I said, I'll save that for when I have to. But at this point We work very well together. And I think sometimes. Advocacy doesn't have to be loud. Mm-hmm. It doesn't have to be big or adversarial. And it doesn't have to be scary. Oh. Can you share the story about the bus driver? I love this example of advocacy. Yeah. 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. There's growing pains and thankfully we live very close to the school. so it, it's not an issue. We do transportation 'cause it helps Henry transition away from like us and home. 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. And a couple days into school, his bus driver was like, Hey, does he have a bus home yet? And I was like. No, but it's fine. And he is like, well, let me look into that because I have time in my routes and I could bring him home. And I was like, huh, okay. But I think he just understood that like, this is a barrier for this kid. Let me check on that. Mm-hmm. Like, let me see what I can do. And I think it was the next day that his teacher was like, okay, we have a bus home. He is coming home at this time. And I was hoping it was that bus driver. and it wasn't. But then the next day he's like, so he is on a bus home now and good. Good. I feel like he, he just cares mm-hmm. About Henry. And I don't think he has any clue that he advocated for the needs of a. 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? Right. Uh, but he has, he was Henry's bus driver last year and he came back again this year and we just love him. He's out. '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. That's advocacy too, because he's letting you know so that you can let Henry know, oh, it's gonna be someone different. Just so you know, like heads up is the sometimes the best. And he told me who he was. Like that bus driver you had yesterday as the sub will be the bus driver and that will be the aide. So Henry's gotten bigger. So he's always been in a five point harness on the bus in the car seat. And the bus driver, this came from the bus driver. He's like, well, he's getting bigger. Do we have a plan for a, like car seat? And I was like, that's a good question. Like whatever we have to do, if I have to buy one of the like five point harnesses that can attach in. And he was like, well, are you okay if we try a seatbelt? And he's like, I'll talk to the teacher when we get to school. And, and then I checked in with the teacher, do we have to change anything in his IEP? But the bus driver's like, no, we can try the seatbelt. And then I, a couple days later, he's like, the seatbelt's been going great. Awesome. And it was all Dr. I'm like, I knew that was coming. Mm-hmm. But I was okay waiting. But he just did it. And he was like, yeah, 'cause and it was the fall and he goes, 'cause come winter, he's not gonna fit. In that, oh, like car seat five point harness anymore. And I was like, it's all the coats and everything. Oh yeah. Mm-hmm. And he was like, cool, if we use a seat belt, I'm like, yeah, I'm good. He's like, okay. Well I love that story. I love that. It's just such a heartwarming story. 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. It's a new organization that you're part of. Mm-hmm. So I have a group of local moms. We have a group chat. And so we've really been able to connect, with moms clinic families and friends of friends who all have autistic kids. and something that. We were really sad to see happen was that the Autism Walk Northland, this past year, it was their final walk. The organizers were just ready to move on. and another mom in our group chat decided to reach out to them and was like, I want to, I wanna take that over. 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. and it's very new. It's very beginning stages at this point. But our goal is to raise money and to fill the need of the community. And that might change. Like we don't wanna say money is always gonna go to this. We want to be able to provide as much money to as many different needs as we can as they arise. and it's really cool to have met Taylor. She is the president of, Different, Not Less foundation. 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. I have Henry and he doesn't speak and we have all of these challenges. Like that's already kind of like she gets it. You're already on that same, we're already on the same page. And what was really cool, in the first time I met Taylor, I was like, I feel like I've known you. We are vibing. We have. Very similar goals and very similar ideas. And just wanna help families like our own and kids like our own and the people who work with our kids. 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. And if we're not seeing a need, it's not going to be filled. I'm so excited for this organization. I think you guys are gonna do amazing things, and I just think about. 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. Mm-hmm. 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? Where can I go? And, I think this foundation will do that for so many more. Mm-hmm. 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. 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. So it's a whirlwind starting this but it has been really cool to see how quickly. You can get a group of like-minded people to just do. That's awesome. That's so cool. Yeah. And so we'll definitely have a link to a way to contact the different, not less, organization. And, we'll be providing, definitely some, some links as we learn more about the autism walk 2026. Mm-hmm. 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. There's a few different, there are moms, there are, professionals. We have a speech therapist on the board, we have OTs, we have, just community members. it's very cool. It's a very cool mix of people. 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. 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. 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. I have so many things that I would like to do. 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. and some of us have like specific places in mind where we would like to accomplish something. And something that I would love to see happen is I want communication boards at the parks in our city. Mm-hmm. And that's something, a dream of mine. I don't know if we will do that. I don't know if the foundation will do that, but that will forever, wait. Forever be a dream of mine because my kid struggles to communicate and he's not the only one. Right. 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. That we don't have a way to fulfill them. Mm-hmm. I would also love to see fences at all of the parks. 'cause I can't take Henry to a park and know that he'll be safe. 'cause he likes to run. Mm-hmm. They're fast. Those little legs are fast. 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. Mm-hmm. That's wonderful. That's really cool. 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. And so we just, yay guys. again, that's part of your self-advocacy group. You created a group of people, like-minded people, and then you decided what you're gonna do with it. Mm-hmm. That's really cool. 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. How did you guy, how did you grab those people into your life? So I, this is two years ago now. I went way out of my comfort zone and I went to a caregiver retreat. it was a couple hours away from here in the woods, in the middle of nowhere. 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. and I met a group of moms. There are six of them, so there's seven of us total from all over the country. And one of the moms just kind of was like. You're coming with us and we clicked, after the retreat, we had a group chat together. We went on a couple of trips together. Since then, we have gotten tattoos together. and so when the retreat came up again, this, this year, I decided to go and most of those moms couldn't go. so I kind of was in the same boat, like put myself out there again. 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. and I met two moms who are current clinic families, and connected with them and spent time with them. And the three of us started a little group chat, and then. One of them was like, well I know this mom, can I add her? And one of them was like, well, I know this person, can I add her? And then we were at the support group and there were more moms and we're like, Hey, let's add these people. And I think there's I think there's 10 moms in there now. So, um, a good collection of families from the clinic, from the support group. So we've mostly met each other in person. 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. and so it just kind, oh, we know you and you have an autistic kid, like, join. And it's just a, a group chat. some of us. We'll throw stuff out every day. Sometimes it is not related to autism. 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? I'm out of ideas. and it is really cool to have 10 different viewpoints or however, never thought of that. Or Ooh, I will try that. Or Ooh, can you send me a link for that? and it's really cool to just know, like they're always there. There's always the group chat. It's a great network, which is really cool. And that is where, several of the moms on the board for a different, now less foundation came from. 'cause we maybe don't all know each other, but we all like have that connection. and it's really cool to be able to. Meet local moms after I kind of found my, my group, and they are my, my core group. Some of my very closest friends, uh, they're all over the country. The closest one is in St. Cloud and that's still a couple hours away. one of them is in New York, one of them is in South Carolina, one of them is in Chicago. One of them is in Kansas City. Another one is in, Wisconsin. So we're, we're all over. 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. Like our next, our next trip we are going to New York. 'cause our plan has been, we will go to where everybody lives so we can meet everybody's kids and families and see. Each other's lives. That's a great idea. which is really cool. 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. They are that group. When my dad passed in October, I very few words I needed to give. They knew what was going on, but they were from afar just the most supportive group of people. They never met my dad. Mm-hmm. they knew what you needed. They knew what I, and it was about just me, which was weird. They were like, how are you doing? but it is very cool that we were brought together because we all. Care for our children with disabilities. 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.? I love that support and advocacy go together. 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. Your advocacy because they ha might have different programs that you've never heard of before. Different approaches, like you said, you're sending links and then bringing it down to the more local level. I'm so glad that you mentioned the autism support group. That happens the first Wednesday of the month at Masonic. There's other support groups out there online only right now the Masonic one is in person. but that wasn't always the case. You know, COVID and things like that. Mm-hmm. So things change and then, but then having some more group of people together, they're like, have you heard about this one? Or, Have you heard about this new therapist or this new playground that has a fence? 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. It's something that has been really cool on my journey as an advocate. Like I didn't choose it. I have a child with a disability, so I am an advocate whether I want to be or not. and it kind of took meeting my six Moon Beach mamas, we met at a place called Moon Beach. Our tattoo is a moon. it took meeting them to find my stride and be able to find my voice because in our group I'm the quiet one. And I remember meeting them 'cause they knew each other. I kind of, they absorbed me and I was pretty quiet. And I remember the first time I kind of really started talking and. One of 'em looked at me and was like, oh, you do speak. Which is wild 'cause I'm very talkative. 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. Right. And it's different, the local group chat with the, the moms I've met here in Duluth. I am one of the moms who's been on the journey the longest. Like Henry is, is older, if not the oldest, out of kind of the moms we have in our group chat. And some of them are just fresh starting out on their journey and something the therapist in me really loves. And wants to do is provide support because starting out in the journey, I didn't have that. I also didn't think I needed that. But when I found it, I didn't realize how much I did need it. 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. Sometimes you're the one that doesn't speak. 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. 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. There's genuine friendships because I truly have love and respect for them. One because I understand their journey and how difficult it is, but two, because we're just a really cool bunch of moms. 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. And so it's very, it's been very, very cool. 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? And we actually, um, kind of weasel our way back in. 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. To help it go better. And we, so the reason why is because you were at the, you were at a, a meeting. Mm-hmm. 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. 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. Mm-hmm. And she, this mom was just sharing what she's been, what she, programmed on the device and how her child was using it. Now, every child is different, but Devon was looking at it and going, I want that. Well, well, not just that, but it was because it made sense to you. But more than that, you're like, oh, I could see Henry loving this. Mm-hmm. 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. But we know that it was. At a stagnant. Mm-hmm. Right. He was using it in couple different ways. And you were modeling without, you know, without expectation. 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. And then you're like, no, no, that's not, that's not what we want. That's not the message we wanna be sending. And so Jillian was part of the GLP group and she's like, we do consulting. And then here, go ahead, take it away. 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. And the first night it was at home, I just kind of set it on the counter, like, we'll have it. Um, he's very food driven. The kitchen is our favorite space, so it all, it all kind of starts with food. Um, and I started modeling and I was like, eat. And he was like, all mom, move your hands. Get out of the way. And he pressed chips and pizza and a whole bunch of things. I'm like, oh, okay. But then, I don't know, maybe three days into it, he, it was on the counter. 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. And he was looking at things and he, I pushed eat and he went apple juice, juice box, apple juice, juice box. And I said. Okay. We don't have any of those, but like we can get some. And then he was like, pizza with pepperoni. And that's three separate, it goes to three separate pages. It was predictive. And he, pizza with pepperoni is one of his favorite foods. he also loves tacos. So the other night he was looking at his device and he pushed salad and he does like salad, but he was like, salad. And he picked salad because he likes the lettuce and the tacos. And then he kept looking and he found tacos and he's like, tacos, tacos, tacos, tacos, tacos, tacos. And it has been very, very cool. And it, like, I get very emotional because for six years we didn't know what was in his head. 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. And know for a fact that that's what he wanted. He can say words, he has words. they often don't have the meaning that you think they would. So when he says cheeseburger, that might mean cheeseburger. Or it might mean I'm hungry. Or it might mean I want to like go in the car and drive by McDonald's. So you're still playing detective all the time. 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. And it's independent. Mm-hmm. And that's the big thing. Mm-hmm. 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. And this time he's like. no, no, no, I got this. And he's doing it himself. And that's really a cool thing. Well and what is really cool is he's always responded better to the pictures of the actual thing, the actual place. 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. '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. 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. And after the first day, his school speech therapist was like, we love this. Nice. 'cause the motor planning just for us adults makes so much sense. And I told my husband as we were. Going through this switch to trial, something new. 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. Right. Right. And it's so interesting too. 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. A century. And then also, every software system has its own evidence-based, like they're doing research and things like that. So this was a different approach that is research-based that seems to be working. Mm-hmm. It's so exciting. That's very cool. Mm-hmm. thank you so much for coming and sharing Henry with us and also the new journey with different, not less. 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. And yeah. And those are posted on our website and our social media too. Yeah. Mm-hmm. So thank you so much for sharing your journey, your self-advocacy journey, and what you're doing. Yeah. Thank you for having me. That wraps up this episode of Hear Me Out. Thanks so much for listening. Be sure to subscribe, share the podcast with others, and join us next time as we continue learning from the professionals, parents and donors who make this work possible and celebrate the amazing kids we serve. To learn more about the Masonic Children's Clinic or to support our mission of providing free speech, language and hearing services, visit our website and consider making a donation. Every gift helps us give children the voice they deserve. Visit us at masonic children's clinic.org.