Episode 29: Empowering Words: Laura Brekken's Story of Advocacy and AAC

Hosts Niki Lampi and Tamara Pogin introduce the Masonic Children’s Clinic for Communication Disorders podcast, Hear Me Out, featuring parent Laura Brekken and therapist Annika. Laura shares her family’s experience navigating hearing loss, speech delay, autism, and AAC with her sons Jameson and Henry. She highlights Jameson’s growth after starting therapy at the Masonic Clinic, including increased communication and reduced frustration with the use of TouchChat AAC. Laura also discusses the impact of parent support groups, Music and Movement classes, and learning about Gestalt Language Processing. The episode also spotlights the Different Not Less Foundation and an upcoming autism walk/resource fair focused on expanding community resources.

Transcript

0:04

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. Today we are here chatting with Laura Brekken, who brings her son Jameson in for speech therapy and whose younger son Henry plays with Ms. Andy in childcare, which may be the highlight of his week. And soon Henry will be also starting his Masonic therapy journey with Jillian in May. She's here with Annika. Hi Annika. Hi Annika's Jameson's therapist. And is working with AAC with him and through his journey and helping him communicate, to the highest potential that he has. So she's here to share her story in hopes of helping other families on their journey in speech therapy. Welcome, Laura. Thank you so much for having me. I'm super excited to come and share with everybody and talk with you guys. I'm so glad you're here. the first time that we met in the waiting room and you started sharing your story, I was like. Can I ask her to be on the podcast? I really want other people to hear this because you're just so inspirational and you're so strong and you've just really been through, you've been on a journey and it, it's been a ride. Yeah. And yeah, as soon as you mentioned the podcast, I was like, oh my gosh, I would love to do that because, you know, I've, I've learned. Um, unfortunately the hard way on a lot of things with this, and so it's the idea of being able to share and tell more people about how much there is actually out there mm-hmm. Is just something that I would love to be able to do more of. Well, thank you. Thank you for, for being here. Thank you. And you have two beautiful boys that I swear they're, every time I go into the waiting room and see 'em, it's like, oh, my day just got happier. They, they're just wonderful little guys. Thank you. Um, can you just start by telling us a little bit about the background? Yeah. So I. Like you said, I have two boys, Jameson, who is four, and Henry will be two in two weeks, so that's exciting. Happy birthday to Henry. Yeah, my little almost leap year baby. Yeah. Yeah. So he, we started this journey, oh, it's been a while. Jameson was about 18 months old at his. 12 month appointment, we found out he had hearing loss, and a speech delay. At 18 months he had tubes placed and we hoped that that would resolve. We started around two and a half. He started with the birth to three program superior and it just wasn't a good fit for our family. Henry was just being born. We had a lot going on, so we kind of stepped back. And so we started up, um, at the St. Luke's Hospital with speech therapy when Jameson was about three. And then we moved to Masonic here, just last May. And it has been life changing. So that's been really fun and it's really wild to see, how different my kids' journeys are. So, Henry's journey has been. Complete 180 to how Jameson's was. He has been very vocal since the day he was born. We called him our feisty little redhead because that's pretty much sums him up. Um, he's my menace to society. Adorable. Second born. Second born. Yeah, that's how it goes man. He's no fear. So he had a lot of health issues as a baby, which also kind of. One of the reasons that we had to pause a lot of Jameson stuff because Henry's health issues took the forefront. So we started, I started advocating really hard for Henry's health and a lot of that, which was a really hard learning curve because I'd never had to do that before. Um, right. And plus you have, another son with. Some needs and then now you have a new baby, which just that in itself is a lot. Yeah. And I ended up having to quit my job and become a stay at home mom. because we were going to the cities and doctor's appointments. Five days a week. we were going to the cities multiple times a month. Thankfully my husband's family is from the cities, so we have support there. But even still, my husband works a lot and he's a UPS driver, so he doesn't get time off. He can't take, a half day or take an hour off to go to an appointment, so it all falls onto my shoulders, which is great. I love that I can be that way for my kids and that we have the capability for me to do that, but it's also a lot and I had to step away from my career to be able to do that. So yeah, we started with Henry. We ended up getting quite a few diagnosis for him. Powered through specialists. We started at St. Luke's for him with physical therapy, which is how we found that occupational and speech therapy would be such a benefit for Jameson because we were seeing physical therapy. They were like, Hey, he would actually really benefit from this because he was coming to all of Henry's physical therapy appointments. So you knew that. Jameson had hearing loss but weren't connected yet to the therapies Correct. Until you got Henry involved. Okay. Yeah. So Henry kind of helped out his big brother? He did, yeah. And yeah, we didn't know that he would have such a speech delay and speech problem with the therapies because they told us for his hearing loss that the tubes would fix it. Which it, of course did not. Yeah. Because that doesn't just, it's not a magic wand. Mm-hmm. Um, so yeah, so as our Kelsey Putvin, our audiologist would say it gives you access to what you didn't have before. So he had access to better speech, so that, but then he still has to be, find ways to, learn from it. And so things like that. So he was a very quiet baby, you said? Yeah, Jameson. He never cried. He didn't make a lot of noise, ever. And like I said, once we found out that he had hearing loss, we were like, oh. That makes sense why he never wanted to make noise because he didn't know he was supposed to. And I mean, he could hear us, they said it sounded like, everything was muffled for him. So like you were talking to him underwater. Mm-hmm. Um, so that's why he also fun fact about Jameson is he loves to make up his own words for things, which has been. A learning curve for everybody involved. Which were the a a C device has changed our lives for that. So Jameson got speech and OT Yes. And Henry was getting his therapies correct. And then you all came over to Masonic Yep. And met Annika or, yeah. Started seeing Annika here. Yes, we did. Yeah, it's been great. Annika is literally the kindest person on the planet. She has embraced both of my kids, even though Henry isn't one of her patients. She has embraced both my kids and myself with wide open arms and made us feel. Just so involved and you know that what we were going through was, it's okay that it's hard, you know, there have been many sessions. I have come and just cried and cried and, just having somebody to be able to. Understand is huge. I like how you said that it's, it's okay that it's hard. Mm-hmm. It is. And you know, I'm, one thing that I don't like to sugarcoat for people is that this has not been easy. This has been really hard on me. I. I personally have had a lot of problems because of it. You know, my mental health has taken a toll because I'm more focused on advocating for my kids, which I love that I can do that, but it's been really hard and I'm, that's something that parents don't always get to hear from other parents. You always hear the, oh, parenting is the best gift ever. Yes it is, but it's very hard. And having two and having two of them that both have special needs is really hard. And so that's been a challenge. Well, they're so lucky to have you as their mama. Thank you. Because I know you advocate, you work really hard for them. Yes. so you started out, you made this sacrifice to, stay at home so that you can advocate for your children and get them the, the diagnosis they need, the therapies they need. And you were honest, you said that's really affected your mental health and that it was, it's hard and very isolating. Um, and so as you came here, you talked about really bonding with Annika and how she made space for that. But then what about some of the other things that you did to find. Your way with, with all of this, you know, and to hope. Yeah. So, um, obviously Annika was a, our ticket in, I mean, she was the one that opened a lot of doors. We started the, music and movement class for Jameson last summer and he thrived in it. And my favorite part was that they had. Mom time, and that was super exciting for me because for almost an entire year I didn't have anybody else that ever knew what it felt like to have kids that struggled. My friends that I had before have. Neurotypical children, neuro no or no children. And so, you know, none of them could really understand how hard it actually was. So being able to come to the Music and Movement class, I was able to meet. I met two other moms. The first couple of weeks, since then I have become almost completely best friends with one of them, um, whose son still does also come here as well. We spend a lot of time together and it's been great because, you know, you don't have to feel like you have to hide. I can go over to her house in my dirty clothes from my kids rubbing their. Boogers on me, or they're half eaten granola bar smooshed into my pant leg. Mm-hmm. Because that's real. That's real. That's how it is when you eat four foods, that you're gonna get 'em covered on you. Mm-hmm. Um, and you know, it's, it's nice to, or she can just be out at an appointment and she'll be like, I had a really hard time. Um, and she'll be able to just come by and I don't have to feel like I have to clean my house and make sure that everything. Is in order because she knows what it's like. Mm-hmm. You know, I don't have to be embarrassed that my kids have dumped every single bucket of toys out because that's what they like to do. Or I have a swing in the middle of my living room. You know, it's, it's just been really inclusive and so I am unfortunately someone who is very, I struggle in social situations, so meeting new people at my age, I feel old. I'm not, but I feel old. Is hard. Making friends as an adult is a hard thing to do, and finding people that have similar things going on in their lives is even harder. Um, so finding a friend and then because I was able to build that bond with her, we were then able to both feel comfortable enough to branch out further. That's really cool. So yeah, so then we started coming to the, monthly autism support group. And so I just wanna interact Yeah, interject that. The, the Autism Parent Support group is a, it's a co it's a co-ed thing with, um. Masonic offers the space, but then Essentia has a, a licensed, um, social worker that comes in and is just kinda like a moderator. She's just there to like, keep the doors open because it really is a place for parents to come, and it's usually the first Wednesday of the month from four to five 30, and then there's childcare that's, that's provided. So that really is, we try to remove that barrier. For parents to be able to come in, like you said, to just be, and the same thing kind of happened with music and movement. It was a, it was a 10 week class where Annika and I did it together and we tried to pair kind of. Um, children of similar development and so we had did music and we were doing things and trying to get them to interact with other kids and other, and other therapists and just in a nice way. But then the parents, you know, we did kinda leave it up to you we're like, here's this information on why music is good for your kids. Read that, ask questions. So we kind of like gave icebreakers a little bit, but yet really by the second week you guys were like, we got this. Literally, I, I, I love that you guys gave us all those forms. But I don't think I ever read one while we were actually in the conference rooms together. Yeah. They went right into my purse and they got read at home because we were, we just all instantly were like, yeah, let's talk about all the things that we don't get to share with other people because you guys actually get it, which is huge to be able to. Share an experience and someone look at you and go, yeah, that happened to me last week. So did you start the autism parent group together with that friend? Yes, I did. I mean, there's, the parent group has been going on for a while. But I mean, you went there for the first time together? Yes, I did. Okay. And then at that same time, I also was starting the program, the GLP Education course, which I don't know if Annika wants to interject and say a little bit about what GLP is. 'cause she's better at explaining it than I am. Yeah, so GLP stands for Gestalt Language Processing. Um, we have two different language learning styles that people can go through. One kind of going from babbles to words, phrase and conversation, and then gestalt language processing, going from chunks of language, catching on to those intonation. Meaning pieces and then progressing through, mixing and matching those chunks of language, adding in grammar. And both of those language styles will end at, uh, novel language generation. So working through that class to educate families and help them feel equipped that they can share that knowledge with other people in their children's life and how to support them. Yeah. Excuse me. Yeah, so she was able to get me hooked into that program, because we were still learning a lot about Jameson's speech, and the different paths that he's taking because he's taking a very non-traditional path on every aspect of it. But it also opened that class, opened my eyes, to how. Henry has actually a speech delay, and I just never knew it because we realized that he is actually a GLP, processor and we, I never would've known because he just repeats everything that Jamison says, and he was starting to present with his gestalts. And without taking that course, I never would've caught on that. Those were actually gestalts. I would've just thought that. That he was a 2-year-old saying things because Jameson never talked. So we didn't know what was normal or not normal. So it's, it was really an eyeopener for us. And those gestalt can mean many things. Mm-hmm. So it might be one phrase that seems random, but it might mean, You know, it's time to go, or I wanna be outside, or I'm all done. Mm-hmm. Um, does he have any that are really unique that you can share? yes he does. So one that he used to do a lot, because he was in therapy for so long, all of our OT team and PT team would always be like, you did it. And he would say that. Every time he did something, he would just go, I did it. I did it. And it was always, we started to realize it was actually a gestalt because it was the intonation with it. And I mean, he would say it all the time and I'm like, okay, I know you can walk now. I'm glad that you can walk now, but you don't need to say, I did it every time you take a step. I love that for us. So yeah, it's, it's just been really cool. And one of the things that we learned with Jameson is, like I said earlier, he has his own language because he heard things weird for so long and when he tries to say something, it just doesn't come out that way. Annika and I have spent many hours and many a days, um, scratching our heads going, what is that? I don't know. Um, I will never forget the first time that I really came in with it. And I looked at her and I was like, I've been trying to figure this out for two days and I do not know what it is. And he was saying, Dasai, and we were like. What is this? And mind you, at the time he maybe had 10 words that he could say, and so he just started spitting out dasai, and then we were like, I don't know. It ended up meaning construction site. Oh, okay. Could not tell you where that. Kind of, and he still says it. I mean he's, it's been almost two years that he's been in speech therapy and he still says dasai for things and like one of his biggest ones that he would say. So side note, Jameson loves construction. Everything about construction trucks. I could tell you I'm a pro. Yeah, there's so much construction. You could write a book. I could write a book. I have thought about writing some children's books about it because I know every single one of 'em. But he loves construction trucks and his favorite for a very long time was the excavator. Well, that's kind of a hard word to say. So he called it a guy mirror, and I wanna say it was what, probably last week. He said excavator for the first time. Wow. Wow. And my jaw dropped. It was so casual in play. He had the vehicles and Oh, excavator go here. And I was like, not. Oh my gosh. We. We got excavator. Yeah. And she like literally came out and she was like, you need to come in here right now. Because he's saying things that you need to hear. That's exciting. So it was really cool. And another one that he just dropped out, uh, was grandma. So for a long time he could never say grandma or grandpa, which is what my parents go by. My husband's parents are Nana and Papa. Which are pretty easy to say for kids, so he could always say that. But he called my mom Rory because he couldn't say grandma. And since Henry has gotten his AAC and has been pushing the people button all the time, he pushes the grandma button. And Jamison just walked into the room one day and was like, I wanna see Grandma. Oh. And we were like. What, what'd you just say? I, I actually shed tears over that one. Yeah, I bet. Um, and then we called my mom and he said it on the phone for her and she cried. Um, yeah. That's amazing. He's never said it before. What a big date. Yeah, it was really cool. So it's just, it's so cool to see, but. Even with that, we do see that those are some of his gestalts, because when he's dysregulated, he will go back to them. Mm-hmm. He will say the Guyer or he will say Rari or, Rari and Papa and those kind of things, versus knowing that he can actually say those things. So it's, it's been a really interesting learning curve for him. Yeah. And you mentioned the a a C with Henry. Yes. So tell us a little bit more about the use of a a C with your kids. Yeah, so my boys both have a, a c devices currently. We just got Henry's his two, almost three weeks ago now, and it's been super exciting. Jameson's had his, um, with the. Chat, uh, the touch chat is, yeah. Mm-hmm. Touch chat. And he's had that for almost a year, and it has changed our lives. Like there's, I was very skeptical. So Jameson is someone who is very obsessive over things, and he can have an. It was something that we tried once and it turned into he would sit and play it for 12 hours without looking away, and that's his autism showing. Mm-hmm. So we were a screen free home. And so Annika and I talked really in depth about getting him a device. I was very skeptical because I was so nervous that he would want it to be more than that and that he would be become very obsessive with it. Which surprisingly. He hasn't. So it's been really good. But she was like, I tried it with him today and I have to show you something. And she literally walked out and she was just like, look it. And he literally just picked it up and went beep boop, beep boop, and like started hitting buttons and was like talking on it. Super cool. Mm-hmm. And that's what's so neat where you, I'm so glad that you were able to work through, you know, your concerns. It's new, there's things about that you're, you're worried about for him, for his, like, will he be able to use it for you to be able to keep him, you know, keep safe using it. But again, there's like things that we can work through that Jillian has talked about where there's like guided access, meaning that it keeps it in the, in the program that. To, to be able to communicate rather than maybe something else that they've, he's learned before about what an I iPad can do. So, and I think the key guard that you had on it initially, which is like a grid over the top of it, it changed the look of it enough where he's like, oh, well this is something new. And then Annika showed him just a few things it could do. And it was powerful enough that he's like, well, I don't need to try to get to YouTube. I want talk about all my construction vehicles, or I wanna talk about all the co, I don't know what you did the first time. Did do animals or did you go straight to construction for the Inn? Oh, went straight to vehicles. Literally, that's the first button. And he's like, I gotta find it. Yeah. The first day we, it went home with us. I had to immediately put every single construction thing on there and. Since then, there are now almost four pages of it, because I've continued to add things. But yeah, that was the first thing. And for a long time he used it just as a stemming, you know, he liked to just push the buttons and hear the titles of things, but then we started to really see that he was picking up a lot of new things because of his stemming. And he was, turning those things that the a c device was saying for him. Into his consults and would then fall back onto some of those things. So it was really cool to see how much he actually learned from it. And you know, I mean, just today, I think it was at our, I think it was at our session, I, he was playing the perfection game and he went to put in one of the shapes and he looks at me and he goes, this is an octagon and puts it in the octagon spot. And I was like. I've never told you what an antagon is. How do you know that? Oh, it's on my words. That's he calls, we call it our words because if we call it an iPad, he thinks it's an iPad to play on. So he was like, oh, it's on my words. And he like. People and showed me where it was on his words. That's so cool. So this highlights to me that importance of what we call total communication. So just as you've been talking, people are like, wait, wait, wait. I thought Jamison needed the A, a C because he wasn't a talker. Mm-hmm. Yes. And then he became a more verbal user because of the support from the a c. So he uses both at the same time? Yes. Where we're also honoring his gestures. He's such an expressive kiddo. Oh, the little smiles, the little frowns. He lets you know what's happening. Yes. And then you're saying he's learning from both. So he. After being able to hear the correct pronunciation, the consistent spots and learning on the device, it came into his verbal repertoire as well. Yes. Or starting to Yes. Which is exciting. So I just wanted to point that out to everyone, that it's a constant process and as long as we honor this total communication or approach, maybe someday you said if he's dysregulated and he's using more of his gestalts. We can honor those, but we can, but maybe he's more clear. We giving him access to his words. Yes. His a AC Yes. On a certain time of day. You know, things like that. Yeah. It's, it's, and you know, um. Another thing too that the A a C has really brought to him is the confidence. When we first started speech, I was not allowed to be in the sessions because he would not talk to anybody. If I was in the room, he would only speak to me because I was the only person that could understand what he was trying to say. And. That was really hard because I was home with him all the time. So, you know, getting him to have the confidence to talk to other people, um, it's still hard. He's still a very shy kid. He still comes back to mom and even still, when I come into his sessions, I do notice that he does shut down more. He's more talkative and more expressive and more. Excited to learn new things when he's by himself in there. And so that is hard for me because I do like to be involved in those. But that's one thing that the a a C device has brought is it does allow me to be a part of his speech journey, even if I can't be in his sessions every twice a week with him. So that's been really exciting. And you know, he loves to show people, he's very protective of his, his iPad and his words. Nobody else can touch them. Not even mom when it's during daylight hours. So all of my updates have to be after bed and he's sleeping and then, so that's his voice. That's his voice. That's his voice. Don't touch it. Yep. And that was one of the reasons that we, jumped to getting, Henry started with one too. He obviously was very curious about it and seeing Jameson use it and being able to communicate so well with it. He kept wanting to. Use his, his. And so, you know, Jillian and I talked about it and we agreed that we would start him earlier than we had planned. So he has started with his a a C device, even though he has not started with speech technically until May. Um, so it's, it's a little bit of that gray area in there, but it's already. Given him such a huge vocabulary. He's picked it right up. He literally, the first day he put it on and he walked around. He's like, my words. My words, my words. Oh, exciting. Oh, yeah. So Jillian and you, like Jillian used that a, a c consultative part of her position to work with you. And of course, your expertise of having Jameson have been an a c user for almost two years now. Mm-hmm. That you're like, we got, we, we got this. And so, yes. Yes. You're kind of going through and sharing some of the things about planning 'cause, 'cause Henry has different needs. Yes. They are very different. And so, um, so that might mean, you're using the same software, but it might look com completely different because he has different access needs. Yep. Different out in different verbal capacities at this point. 'cause Henry does have more of a, a more of a range. Yeah, he, he's very chatty. He will chat, chat, chat, chat, chat, chat, chat. But He gets more dysregulated, easier, and when he gets dysregulated, he goes into shutdown mode. And so, you know, a big thing that we are trying to get him to learn is that even when he's dysregulated and his actual voice isn't working, he can use his words to communicate with us. Because. You know, they always say the first thing that goes when a kid's dysregulated is their voice. And he is a prime example of that. And he does, he has a lot of different needs and we have already found that their journeys are going to be very different., Where Jameson had, you know, that. Hearing issue, which caused a speech delay where Henry didn't have that. So he could hear and he could, he can make all of the sounds for all of the words. So spitting out 1800 words, that's fabulous. He is a true GLP where he doesn't know what any of those words mean. He just knows that he can say 'em all, where Jameson didn't say anything until he knew what it was. So, so different paths, but they're both benefiting from the Yes. The a c They're both glp. Yeah. Yeah. It's been a ride. It's been very interesting. Yeah. 'cause and Jameson is diagnosed with autism. Henry has not been diagnosed, but we are having him screened this summer, so, okay. And part of your journey too has been connecting and I think kind of helping to start a new group in our area. Yeah. So one thing that has come around, it started off with the support group. We had a few of us that had clicked right away and we started a little side mom group chat and started spending some time together, and one of them decided that she was going to be opening a nonprofit. And asked some of us to be on the board. So I have joined the board of the different not Less foundation, with several other moms. Some that you've met with, Devin and Annika here is also on the board with us. And then it's really cool because Jameson's OT from St. Luke's is also on the board. And so it's been really fun seeing. His direct community also become my community. Um, you know, I've always joked and laughed, especially when Henry was going to PT twice a week in addition to everything, that I spent more time with my, my kids' therapists than I did with my actual friends. And I was like, you guys are just my friends now because I don't see anybody else. And, you know, it, it, it did turn into a bond and a friendship and. You know, it's, yeah, it's still a professional relationship, but it's, it's someone that I can come to when I'm having a hard week and I can sit down and be like, yeah, this, this week was really hard for Jameson, and I can talk to them about that and not. I feel bad that I am letting that information out. You know, I don't have to feel ashamed that I'm having a hard week. And it's just, you know, when you start spending two to four hours a week with somebody, you're going to connect with them. And that's been huge. And then having the different, not less be able to be able to, come out of this is just such. An amazing thing. It's a fabulous foundation. It's just going to open so many doors. My husband is like, what is this for? And I was like, I am just trying to give our kids more. I was like, I just want them to have everything that they could ever want. I just want them to feel like they're not different. You know? That's been. A really big thing, especially with coming to Masonic, is they see kids like them. You know, they see other kids carrying around their a a C devices. They see other kids having a meltdown because leaving somewhere is really hard. They see other kids not verbalizing the same way as normal people do. And they realize it's okay, you know, I'm different, but that's okay. And that's been just huge for them too. something that we've really struggled with with Jameson is he doesn't play well with others. He doesn't like to play with others. He doesn't. He's a very individual solo, they call it parallel playing. And. Yeah, it's been a really hard ride with that. You know, we had a second kid so he could have a friend to play with and he wants nothing to do with him. It's hard. Um, different, different than your expectations were. Yeah. So having to adjust that, I would imagine is, is challenging too. Huge. Huge, huge, huge. And being able to have him see that there are other kids. That don't like to play with other kids too. It's just, it's just changed his world and it's changed my world and being able to raise awareness for the community has just been such, it's, it's filling my cup. I love that. I love that. I love that you. That you found your safe space and that your kids found their safe space. Yeah. And now you are using what you've learned to advocate, not just for your kids, but for other people in the community, other families, and that work with Annika and that all of you're doing it. The different, not less foundation, I think is gonna be really, really impactful to so many people. Yeah, it, we have a lot of big plans and a lot of big ideas and I can't wait to see how they really start to form. Yeah. And one of them is the walk that's coming up, correct? Yep. The autism walk is in April. Autism Awareness month is April, and it is April 26th at the deck. And we are really looking forward to it. We have a lot of fun things that are going to be there for the kids, but also a lot of resources for parents. Something that I've really learned with Henry's. Diagnosises and everything. We had to go to the cities a lot because they didn't have the pediatric levels. They didn't have the pediatric levels here. Um, you know, like a lot of the specialists for urology and GI and all of that kind of stuff. Or if they did, it was. A six to eight to 10 month wait list when you Wow. Because they might come up only like once a Correct. Once or twice a year. Yep. So Henry's urologist does come up every five weeks, but it's a six month wait for him to come or see him because he sees only so many patients every five weeks. And so we just, were like, we'll go down to the cities to 'em. I'm like, I'll, I'll drive. I don't care because it's just faster. He had surgery last year, so he is almost been a year since surgery, which has changed his life also. But because of us spending so much time in the cities, it really opened my eyes to the resources that are available there and just the lack of resources that we have here. And I'm talking. The basics, not even for neurodivergent children, but just for kids in general. I mean, the play areas, the parks, the different activities that they have everywhere down in the cities. You get one option here and if that one doesn't work, shucks, too bad. So, you know, it's, that's something that the different not less foundation is really working towards is too. Expand a lot of that. You know, we're reaching out to a lot of those companies down in the cities to be like, Hey, we do actually have a need for it here. Like, we would love if your company was interested in expanding because here's a thousand parents that have come to this event with kids that are like, yes, please. So, you know, it's huge. And with our winters. It's impossible to be stuck in a house with your children all day long, because I'm gonna tell you what, it's rough. It's really hard. And I'm always surprised that there's not more indoor play areas here because it's so cold and it's so cold for so long. Yeah. Like, yeah. Well, I love that you're getting, That awareness. So those companies in the cities probably don't even know that they're needed up here. Yeah. Mm-hmm. And that's the biggest thing. And I mean, even when I had been down to a few places, I had just in passing, been talking with the people and I was like, do you guys have other locations? Like anywhere else? And they're like, no, we'd love to expand, but we just don't know where we would go. And I'm like, I got a list. If you'd like, but Awesome. Yeah. So, you know, being able to get that exposure and get more for our kids is just huge. So, yeah. So the, so, so right now you have a lot of ideas, but the autism walk is what's on the list. Yes. For our different, not last. And then the goal is to make it a resource fair for people, a community event, because there's gonna be things for the whole family to do. But then it's also gonna be a fundraiser for Correct. The foundation. Yep. So that you can do some of your other big ideas. That's correct. Okay. Sounds good. Sorry, it kind of got alluded there, but it's lot to talk about. Lots to talk about. Yes. So we are really impressed with, how. Your family is an aacs family journey. How you really spearheaded that and, and, um, got over that intimidation and that fear right away. Mm-hmm. And how that really made a lot of difference for, for both, for both boys now for different things. Yeah. And it's been really fun to see, how much it's opened. A lot of close-minded people's ideas too, because you know what, like you said earlier, Tamara, that everyone just thinks, oh, it's an iPad, or he can talk, what does he need an a c device for? He can, he can talk. What? No, it's so much more than that because yeah, he can talk, but do you know what he's saying? No. Sure, mom knows Dad can pick it up 40% of the time, but you know, and. One of the biggest things that we found was that we went on a vacation last year and we were going to be gone for 10 days. My husband and I with my parents, who are the only other people that my children really spent a lot of time with, obviously there's a lot of other people in our lives and my husband's grand, my husband's parents. Are the ones that ended up taking care of them while we were on our vacation. Well, they didn't know how Jamison communicated. I was with him every day and I didn't know how he communicated. And so, you know, we really, we were like, we need to get something so he can communicate to them. And they have seen just from. The few times they've been able to see him really thrive with it, and they were like, it's just amazing because he's sitting here and he would have a meltdown because he couldn't tell us what he wanted and he had a lot of behavioral issues because of it. And he would head, head bang and self-harm. And I mean 30, 40, 50 minute meltdowns because he just would sit there and say this word. And we had no idea what it was. And we had no way to get him to tell us. 'cause we had nothing. And the first things that we did with the device is we would get him calmed down and then we'd sit there with it and push all these different buttons and be like, is this it? Is this it? Is this it? And then finally he would find it and he would be like. Mm, this one, this is it. And he would be like, yes. And he would get so excited and we just would see it happening more and more and more and more and more. And the meltdowns just. Started to decrease and I was like, oh my gosh. He doesn't have to cry all the time. He doesn't have to hit his head against the wall or against the floor because he's so frustrated that we don't know what he's saying. You know, he can just say, mama, show me and go get his iPad and push the button on his thing that he wants. It's not perfect. It's not a perfect answer. You know, there's a lot of personalization that goes into it, but it's a start and that's all you can ask for when you feel like you're up against a wall is a start. I think that's beautifully said. Yep. Thanks and, and so powerful. And I've met many parents throughout the years who have really been nervous to try A a C and they say, well, what if they. Won't talk because of that. That was a concern I had too. I was like, I don't wanna take away from the little bit of communication that he does have. I don't want him to only push buttons. Right. But like, as Tamara mentioned, the total communication, you know, you really see the opposite of that. It's a really a good language learning tool. Yes. Along with being their voice for a while or when they can't access their. Their own voice. Yep. It's been huge because he will just push a button and immediately repeat what it says. Mm-hmm. As he's learning to say the different things. So some people might think, oh, they're just stimming with it. They're just playing with it. But it's really part of that learning process. Yes. And just like, you know, younger children who babble and they do that sound play and word play. It's the same. It's the same type of learning, just with a different voice. And that's where his GLP really kind of comes into play with it too, is he doesn't sound things out, he just learns the word. And so the a a c device has really opened that door because it has so many words for him. And he can just sit there and instead of practicing going ba, ba, ba, he can hit the thing and it says, ball, ball, ball. And then he can repeat that until he realizes, oh, I can actually say this word. I see the picture. I know what it is. Cool. I'm gonna point over there. That's a ball. Very cool. That's really cool. And, and yeah, like you said, there was some, there was some, um, babbling that Kenny kind of did on the device, but then did you, how did you feel when it's, when it kind of like started to shift from just exploration to connection? Like did it, do you feel like for Jameson it happened right away? It sounds like it happened with Henry right away because he's already had that model secondhand. Yeah, it happened with Henry pretty quick. I wanna say. Um, it was a little slower with Jameson. He, I dunno, I feel like the buy-in for him was definitely the label and like, here's this thing I'm playing with, here's the word for it. I get to hear it and express it to this person I'm playing with. And then it kind of progressed from there into being like, okay, this word is still tricky for me to say applesauce or something, but I can express to mom or dad. That I want eat applesauce by pushing this button and then I get exactly what I want. We don't have to play this game of 20 questions and getting right frustrated and, and then it's that sense. It's not the well, is it this? No, is it this? No. It's then, you know, he's getting frustrated and I'm getting frustrated because it's just the constant, I don't know. What it is you're asking me for, you can hear it and then, you know, it always makes you wonder like what is in their little brains like I was just gonna say like I feel like he's the perfect example of kind of like minimally or non-speaking does not mean non-thinking. Yes. It does not mean Yes. Non communicating. He is so incredibly smart and he has so much he wants to say, and that breakdown between what his physical abilities are right now versus. How he can express those was a barrier. And then to bring in the communication system is like, holy cow, there are so many things that he. Knows, and now we get to hear them, how he intends for us to hear them, and we get to have more robust connection and mm-hmm. Experiences because we have this tool in our toolbox. Now, I love that there was a toolbox because, like you said, like. For Jamison, he might try some words with someone who's a little more familiar. I was tangential. I was part of the music and movement group, and so he knew who I was. He kind of saw me around, but I didn't have as much one-on-one interaction time with him, but with the a, a c device and access to that, he, at first, he would just like shut down if I tried to talk or interact with him because he's like, Hmm, you are not Annika, you're not mom. Like why are you trying to blow bubble? But then we had, we did the bubble thing and he's like. Oh, that's kind of fun. Okay. Or he would, or we'd let him have like different things on the side. And so he'd come over and he'd, he'd touch my hand and he'd be like. Excavator and I'm like, that's so cool. Like, it wasn't anything that we were trying to do. But again, he, it so it impacted him socially because he's like, guess what? I might have be having a hard time with what's going on in the room with the expectations of what's happening here. Like, being able to interact with the music or even with other things. You know, Annika might be trying to help regulate another child who's just bawling over here and he's like, I just wanna be having fun. But there's this lady I don't really know very well and annika's busy. Oh. We could talk about this. And we did. We'd go back and forth a little bit and we'd play with, or then it, then it became playing with other things. Like we started playing with balls and talking about the colors and, and then with the go button, when that was the, the real big thing. Oh. And then he realized that I could blow the bubbles if he said go. And I didn't even realize that. He said, go verbally. I didn't know this at the time he can. Mm-hmm. But in the moment with all the stuff that was going on, he didn't have access. Well, and he, yeah. His brain just was like, Nope, I can't say that. Yeah. And so, and so he was like. I know she knows what I mean. Go and all these things and so it was, that's so cool. It was really neat to see that in the way that it actually impacted his social opportunities too. Yes. It's been huge. And you know, when we're out in public, kids are curious. Other kids are curious. I mean, we were just at Dairy Queen the other day. It's his favorite place to eat 'cause he loves ice cream. Me too, bud. Me too. Same. But like, I can't eat Dairy Queen three times a week. That's not working for me. But he, uh, we, both of the kids were just sitting at the table waiting for food and they were pushing their buttons on their devices. And two kids at the table next to us both got up and walked over to the table and were like. What got there, like that's really cool. And they were able to communicate. Jameson mostly was able to communicate like, this isn't a toy. You know, that's something that we have always been very big on advocating. These are my words. This is not a toy. You know, we don't, other kids don't play with it. I don't, it's not a toy. I'm here to push buttons and yeah, I have my cool things on here, but it's not a toy. And he almost immediately was just like, yep, these are my words. It's not a toy. And the other kids just kind of stood and watched them and they kind of looked at me and they're like, what do they have these for? And I was like, well, they can't talk very good. Um, so they have them to help them communicate with people, and they're like, that's really cool. They were probably like. 8-year-old. That's awesome. Kids. And I was just like, yeah, it is really cool. So it was cool to have them actually be able to have other kids come up. 'cause obviously we get a lot of looks from parents and the older generations in stores. Oh, look at you have two iPads on your shoulder. Oh look at your parent. Your kids are walking around with an iPad because they don't see what's on the screen. They just dunno. It's their voice. Mm-hmm. Correct. And I have looked at getting like a big sticker or. Like a key chain kind of thing. Jameson's is a little bit easier because it has the handle label on it, like it has his name on it, where I feel like people are like, oh, you wouldn't just put that on an iPad. Like, that's definitely like something, and it's just becoming more popular, I guess, to have. You see more people out in the wild with it. Mm-hmm. Where, but I mean, we still get the looks. I just got it yesterday when I went to the store, you know, the, both my kids are holding onto their iPads in the cart and I'm walking and they're just stimming away pushing their buttons, you know, whatever. Um, Jameson's has songs on it, so he's playing songs on it and singing along in the way he does. It's not actually singing, but Sure. We'll go with that. And, you know, I get. The elderly grandparent couple walking by and they kind of just give me a look like you are letting your, especially with Henry, because he's so little, you know, he looks like he's only 12 months old. Um, they're like, Hmm, you are letting your kids have iPads already. Like, shame on you, mom. Where I just wanna turn around and be like, it's not an iPad. Leave me alone. It's helping them, but. You know, I've, I've had to learn how to bite my tongue in that situation too. And it's more about educating people when they see it. You know, I don't make anybody feel bad for judging them for it. Um, they just don't know. They just don't know. And you know, unfortunately, we live in that day and age where kids just have iPads and it's going to be the first assumption that it's just an iPad, but. That's why I love being able to educate and being so knowledgeable in it to tell other people this is how they talk. Well, you've certainly done that here today. Yes. Thank you. Thank you. Yes. Thank you. Thank you. This was so, I love this inspiring and enlightening. Yes. Thank you for joining us, Annika and Laura, and sharing your journey. Laura. And just continuing with your advocacy. Yes. So we appreciate you. Yeah. And Masonic Clinic is my favorite place in the whole world. Everywhere I go and everybody I meet, I tell about how awesome it is. So, I'm so glad. I'm so glad that you, that you found your place here. Yes, I definitely have. Alright, well thank you. Thank you. 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.