Episode 8: Creating a Path for All: Jocelyn Benson on Complex Medical Needs and Lion's Hope"

In this episode of 'Hear Me Out,' hosts Niki Lampi and Tamara Pogin of the Masonic Children's Clinic interview Jocelyn Benson, a dedicated parent and founder of Lions Hope, a nonprofit supporting children with complex needs. Jocelyn shares her personal journey with her son Leo, who was born with spina bifida and uses an AAC device. They discuss the challenges and triumphs of raising a child with special needs, as well as the mission and impact of Lions Hope, which raises funds for adaptive equipment and services not covered by insurance. The podcast highlights an upcoming event, 'Paving the Trail for All,' aimed at providing inclusive outdoor experiences for families. Additionally, the hosts share their favorite simple play items to encourage communication and development in children.

Transcript

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Welcome to Hear Me Out, a Masonic Children's Clinic podcast where we discuss all things related to communication disorders and how to best help our kids. We will hear from SLPs, clinic, families, and donors, so that we can offer free speech, language and hearing services to children and families. I'm Niki Lampi, SLP and clinic director. And I'm Tamara Pogin an SLP, who specializes in working with autistic children and their families, and we are the hosts of this podcast. Today we'd like to welcome Jocelyn Benson, a passionate parent and the founder of Lions Hope, a Duluth based nonprofit supporting children with complex needs in their families. Jocelyn's personal journey sparked a mission to bring connection. Resources and hope to others. We're honored to share her inspiring story and to tell you all about the upcoming event, paving the Trail for All August 16th and Hermantown Hello Jocelyn. Thanks for being here. Hi, thanks for having me. Welcome. So Lion's Hope raises funds for special needs families who need to purchase adaptive equipment that is not covered by insurance. This lightens a burden and gives children, they. And gives children the tools they need to thrive. So I can't wait to learn about Lion's Hope, but I'd like to start out with your story on how this all got started and what you've learned along the way, like we were talking about earlier, having you here and sharing your story I think is just so powerful. You've been through a lot to get to the point you're at. And, just a sincere thank you for. For taking that journey and sharing it with us. Yeah. So if everybody listened to Theo's story a couple weeks ago, or maybe it's now been a month close to, very similar where birth was great, until it wasn't, he was also put on a cold bed, just lack of oxygen from breathing. So he also has an HIE diagnosis. What does that stand for? I can tell you the H and the I, but at the end Encephalopathy. Yep. That's the last one. So hypoxic Ischemic Encephalopathy. Encephalopathy. You guys got it. Thank you. I, I'm basically a doctor now. Just kidding. No. Um, I've learned a lot because, but it's the lack of oxygen that at birth changed his brain at birth. Yes. And he was also born with spina bifida. So that's basically where like his spinal cord did not. enclose itself. So it grew outside of his body. So a lot of kiddos with spina bifida are have feeding difficulties, urinating difficulties. Leo is paralyzed from the waist down, so he's a wheelchair, but he's super fun to watch in a wheelchair. You guys have probably seen him in the playroom, so yeah. He's so happy. He's such a happy little guy. Yes, he is. So yeah, he was born with spina bifida and now did you know that prior to the birth we didn't, so we. Fun fact, I will either get hate for this or praise for this. We did a home birth. We didn't know about the spina bifida. We had a 22 week ultrasound. They didn't see anything, so we proceeded with the home birth. Nothing went wrong with labor. Heart rate never dropped, nothing like that. But once he was born, we noticed he just wasn't breathing. Mm-hmm. He was life-flighted to. Essentia here and then they weren't doing cold beds at the time, so that was interesting to hear. Theo was able to be cold beded here, so he was life-flighted down to, children's St. Paul where we were there for two months. Oh wow. It's a long NICU stay. It was a very long NICU stay. We learned a lot of things. definitely life was gonna look a lot different than what we had planned, but that's life and out of town too. Yes, it was a long journey. Thankfully. We had a, one of my husband's aunts had a, an apartment in White Bear Lake, so we were able to stay there. And it was like our home, away from home during a really hard time. So we came home. And Leo was still having a lot of issues with breathing. So we ended up, getting him a trach, a couple months later. And we were in the NICU again, or PICU again for two months. So another two months. Stay down in the cities this time in Minneapolis. And I think a lot of people don't realize that, that when you have a child that's in the PICU or NICU, that you're basically living there. Yes. Like your whole life goes on hold and you're Yes, you're up and move. I'm grateful that I am Leo's stay at home mom and my husband's a chiropractor here in town, so he did have to come back home and work. I can't imagine both of us not having work. So it was nice to be able to stay down there and be with Leo because there are parents that don't have that choice and that option, which is really hard. Like they don't have the time off. Mm-hmm. You can't pay the bills. What do you do? Mm-hmm. so you were left with leaving your child in the care of people you don't really know. And that was. Always just like heartbreaking to think that there are families out there going through that, right? Yeah. Mm-hmm. And Jocelyn, can you explain the trach a little bit for people who aren't familiar with it? Yeah. So Leo. He has central apnea at night, so he doesn't breathe at night when he falls asleep. So he had a trach placed, which is basically like a breathing tube, placed in his neck. If you've ever seen a person with something kind of sticking outta their throat, that's a trach. people get them at all ages. Leo got his at six months, he still has it. It'll probably be a lifetime thing, which is fine with us. it was always my biggest fear. I remember like even people saying the tr word trach triggered me. Mm-hmm. And now that he has it, it's like, oh, like this is just, he needed it. And if your kid needs a trach, it's amazing. it helps with everything. He's happier, he's growing, he's thriving. There's so much more he can do now because of the trach. But in the beginning, yeah, it was the scariest thing and I thought it was the worst thing that could have happened. But really it turned out to be the best because it's just helped Leo. Be a kid. Mm. Yeah. It's great. That's wonderful. That is. And then having so many, um, I guess having to outsource all of his needs to the cities, did you feel like it took a little bit of time to connect to the therapists and services up here in Duluth, or did they was there somebody there trying to help you to make that, that connection? That seems like a lifetime ago. I feel like. We didn't start services until after his trach, so that was closer to like he was seven, eight months old. And that of course is like outpatient. There were people coming in Yes. And helping with the trach care and teaching you about that inpatient. Yeah. But it was different than like a speech therapist coming to your home, right? Yeah. So we actually had help me grow coming out before we got the trach. But it was very like, what we were home for two months before we went back mm-hmm. To the long stay in the picu. I thought that it was, honestly, I felt like it was pretty smooth. I feel like it's not something that sticks out to me to as, um, super stressful time. So I thought it was a really good transition. we just felt like specifically with speech, we had been going for so long, but we didn't see any. Progress. So that was super frustrating. So once we got home, we started more help me grow, and that's when we started, the Essentia. Polinsky rehab and we've been going there ever since. We have pt, OT, and speech there. That's great. Yeah. Great place to have all those services in one location. Yes. It was so nice. And it's up by the mall, so we don't have to worry about downtown parking. Mm, amazing. That's even better. Yes. Um, yeah, so we just felt like maybe. Speech specifically, I wanted speech to be like food based. Mm-hmm. And he's just not there. Like he has a really bad oral aversion. So we're just not there yet. And we wanted to look into, which I've never heard of an AAC device until I became a special needs mom. so hearing about that and then starting it, we started with Toby Dynavox just on a home iPad, and we were really told just like, okay, give him two options. Like yes or no. Like you can ask him, do you want this book? He has two options, yes or no. Mm-hmm. And that felt really limiting. And honestly, I think, I hope other moms will connect with this, but at one point I felt like I was using it as a toy and like mm-hmm. It just felt like, okay, like we gotta make this drive into town here, take your device. Okay. and it just felt like a toy. It didn't feel like it was a really. Like it wasn't doing anything for him. Like it didn't have a purpose. Yeah. It didn't have a purpose other than just to entertain you for a little bit. Mm-hmm. Sure. and then Essentia actually said that we feel like maybe if you wanna go down the AAC device route, you need to maybe look into Masonic. And that's how we Yeah. Came about, coming here. And also I heard it from another medical mom, my friend Megan, whose daughter comes here. And she also has an AAC device. And actually Leo and Emmy both have the same, program, so that's fun to see them both. That's cool. And they both see each other's device and okay. They get so excited. So it's really fun to see how far they've both come. That's awesome. Mm-hmm. And how old is Leo right now? He's gonna be three in August. Can I be sorry? September? He's gonna be three in September. Sorry. That's, that's really great. And so that just shows, Uh, Jillian, who is our AAC specialist, had her podcast come out and she was talking about how there's no prerequisites for AAC, there's no age prerequisite. There's no, Rhetoric or cognitive prerequisite. And so it was really nice when he was trialing the device and learning how to use it and, definitely has some access, bumps in the road that you had to work through. Can you talk about how you worked with Jillian to figure some of these things out so that he could use the device in. Multiple ways, or multiple positions I should say. Yeah, yeah. Yeah. So when we came here, we were placed with, I always say Jillian is like the queen of AAC She knows everything. AAC, every company, everything about it. So it was, she is amazing. Yeah. Incredible. It's all the things she knew. I was like, all right, well I can just trust that you're gonna get it done. Like, I don't know what you're talking about, but we're going to get it done. Well, we'll learn it. Yes. Um. So when we came here, she was very big on advocating for like, um, presuming competence, which was like. Something that as a mom, I felt like maybe I wasn't doing because you're always told these are his disabilities. You're always just seeing what he can't do. So it's oh yeah, that's right. But he could do this so well, and I think as a parent, that's a natural instinct too, is just to provide for your child. So you're, we're always looking as parents to be, how can I help? What do you need? How can I fill that need? You know? So Absolutely. That makes such, that makes total sense. Yes. And also but when I'm. A mom who doesn't have any medical background, it was hard to know what's all out there. Sure. So Jillian showed us like, you know, we're gonna presume competence. We're gonna start with 60 letter or 60 buttons, which I was like, okay. That's a lot. We'll see that's a lot. Like, that seems overwhelming for me when I was start, told in the beginning like, oh, just start with two, yes or no. Mm-hmm. And then she did 60 and she's like, he's doing great. This is his motor pan plan. And I was like, um, okay. Like if we're gonna go home with 60 buttons, like I don't think, I think that's gonna overwhelm him. I think he's not gonna know and like he proved us wrong it. Yeah, he definitely knows what he's doing. Jillian was just great about really like making, kind of helping me see like, Leo is smart. yes there are. Things that are going to stop him from doing certain things due to his physical disabilities. But like mentally, he's there, he's great, he's sharp. So these are like the resources and the tools that he needs that he wasn't having before. So of course I wasn't able to see how competent he was because how was he supposed to show me with what we were giving him. So that's been a really cool thing to see. And we're also working on getting mounts because he is, paralyzed. So he is. The wheelchair. And then we also need a mount for the ground. So we've been working on getting a seated mount for him as well. So I'm really excited about that. So a mount is, is equipment that you use, that you put the device, the AAC device on so that Leo has access to it in a, the right proportion so that he can still access it and make selections. So so that, um, it's. Connected to the wheelchair, but in front or to the side of him so that he can see it and then it's not blocking his view, but he can use it easily and then use it A wall, a floor mount. Yes. So that he can be not in his chair. Yes. Be on the ground, but also not have to just drag it around. He can like, come sit right up to it and like maybe play with the toy to his right and then use his device on the left. So it's always accessible. Like not taking we always call it his words or his voice away. Mm-hmm. Yeah. Very cool. And now Theo had an eye gaze device. How does Leo access his device? So his is a touch screen. It would be just like any other iPad that you would see. And we have a key guard, which basically are these little openings that correlate to each button so that he can just point to the button, touch it. So for example, he'll say if he wants me, he can go to people. It'll open up to another page of all the people he knows, and then he can press mom and it'll say, mom. Or he tells like there's jokes on certain pages, he just has to tap the button. And so what a key guard does is that if a child has, less dexterity, can't maybe do a, a really good isolated finger point, so just with one hand, or if they have to rest their wrist on the device to then point with their finger, or if they select with two fingers, there's gonna be less likelihood of getting the wrong. Message, saying Dad instead of mom and Right. Or because they were usually right by each other or something like that. Yes. And they can get very frustrated. And then some kids, and Leo included, will just kinda give up like, well, whatever. That was too hard, I'm not doing it. Mm-hmm. Or you get it. Yeah. Yeah. You know what I'm saying? Yeah. So, what was your aha moment with seeing the 60 buttons and Leo and Jillian interacting or. Leo and you interacting, did he ask for something? Was he just talking about what you were they were playing? Yeah. It was actually, I think it was a really big aha moment. Um, because I don't wanna say I was still dubious about the 60 Nervous. Yeah, nervous. Like that's a lot for a kid. But we were driving on in the car and he loves music and we had, a song on like, Mary had a Little Lamb or Old McDonald had a farm. Something about animals. And I'm zoning out 'cause I've heard these songs a million times. and then I realized that he is pressing the buttons of the animals that they're talking about. So he had a cow and all of a sudden I heard Leo Cow. Wow. And then he had a sheep. Okay, there's the sheep. And I could hear Leo pressing the buttons along with the song and I was like, oh my gosh. Like, wait, he's doing this. I can't believe I'm missing out on this. That's awesome. And no, no cues. You are obviously he's in the back. You're in the front. He's in the back. Yep. I can see him in his mirror just. Navigating on his little pages. And I was like, oh my gosh. So I had to tell with Jillian and I was like, he's using it like, correctly or whatever we would've like to say. 'cause technically he still babbles with other stuff. But it was so amazing to see oh, he's basically quote unquote singing, like that's him singing along. Yeah. That's so cool. And he loves music. He's very musically driven, so it makes sense. Yeah. Yeah. That's really neat. Yes. It was so cool. And then, Beyond like the mount customizations and the key guard, the physical, customizations. What kinds of things have you and Jillian been working on to customize his device? Or in the works? Yes, we, I think she's just taught me to do a lot of modeling, so I'm trying to adapt every page to what is Leo into right now? So what songs do, does he really like? So he can request a song or are there certain toys that he wants to talk about? Are there people in his life or animals? We've recently met people with different pets, so we've added pets to his page. we just got chickens, so talking about the chickens. So we're customizing to like. What are his interests right now so that he's gonna want to keep navigating around. Mm-hmm. And that reminds me of Lions Hope, your nonprofit, because, you also work with, families and. to get those accessories that are, allow them to be a, to have access to their AAC device. Um, when. Yeah. Maybe that's out like outside or when they're, on a boat or something like that. Yeah, yeah. All that other equipment that's needed just for life activities that maybe insurance doesn't cover. Yeah. How did you get involved in Lion's Hope? How did you start it? Yeah, so when we were in the nicu, my husband and I both knew like, okay, we felt like we were placed in this position for a reason. Like, why are we here? This is really hard. What can we do to help others? So we thought of many different situations or I guess, nonprofit ideas that we could go with. and then once we started therapy and saw some of the price tags on some of those adaptable equipment, we're like, okay, this is the way that we're going. 'cause this is insane. Durable medical equipment Yes. Yes. Has a big cost. Very big cost. It started when we were at Polinsky and we tried a per mobile scooter, It was an electric scooter. It was, I believe 21 or $2,500 and it did not grow with him. Oh. So once he grew out of it, it would only take probably a year or two to grow out of, and then it would be you would donate to somebody. So like that for us, we only have Leo, and that was like out of the question, like that's a really big price tag to get through right now. So Think about the other families who have multiple kids or, who maybe have lost a job due to having to stay home with their special needs kiddo. it would just be unmanageable. And I would hate to think of a family who like just can't provide an item for their child that would just help their child thrive. And I think medical necessity can be really hard because. Insurance is looking at, okay, will it help them survive? Not will it help them thrive? And that can be so hard as a mom or a dad, just seeing like, well, I can't help my child thrive because I can't afford that right now. So that's kind of what started that. And then I was on your website and it was really neat to, to see that it's also about giving them access to just be with their own family. Like the whole family can go on a hike. How is that possible? Well, this, this wagon? Yeah. Or how can the whole family go on vacation while this special, chair or something that is, is airplane accessible? Something like that is not, covered like you said, medically necessary. Medically necessary. Yeah. That's been a big one that we've seen a lot of, like the special tomato chairs. that literally, I just don't think that people who don't have special needs kids can even fathom. it literally just helps children sit up and they're like, well, what's so special about that? Well, okay, you're putting them in a, a height chair. So now they're taken away from their peers that are on ground level. Now you've put them on the ground in this special tomato chair that helps them sit up where they, if they didn't have that, they would either just be a laying on the ground with their peers around them standing, or they would be up in a highchair that would actually support them, but then they're away from their peers. So we just had somebody write in that their son, who I think he's six or seven, is now able to sit on the floor with his siblings and play with them for the first time. Wow. Wow. And he's six or seven. So. Like that is just like, oh, it breaks my heart that we're not giving them this access. And now with this chair, which I believe, I think it's between six to $700 for a chair like that. Wow. That's a price tag that not all families can just dish out. Right. And yeah. And what's the value or the importance of having your child be able to be with the siblings and play and create those memories? I think that's one thing that. We often take for granted is, kids just sitting and playing in home. Yes. The ease of it. Yes. The ease of it to like typical parents versus like things you don't Yeah. The things that we have to think about as special needs parents is just, it is very different. And just seeing that, and we have friends, in Duluth, we actually, through our Lions Hope started a medical parent support club and just meeting some of those people and seeing the different needs. I can definitely see how it is very much needed. these grants and this medical equipment that's deemed not medically necessary. So how do people go about getting a grant from your organization? Yeah, we have a tab on our. Website, which is lionshope.org, and it just says Do or, apply now and it just gives you a Google document, you fill it out, you email it back to me, and then we review it as a team. We have a board and we decipher if it falls under what. We are buying, which basically could be anything. It just has to be a thousand dollars or less. Or we could put a thousand dollars towards something bigger. Okay. it just has to be, equipment has been our one stipulation. It needs to be equipment. And my husband has a background in business as a chiropractor. He started his own practice, so he knows all, like the boring paperwork parts of starting a business. So starting a nonprofit can be very similar with getting like an EIN and knowing that you're a 5 0 1 C3. So shout out to. my husband, Bryce, for being the one to do all the paperwork stuff. I was just the one that got to do like the logo creating and the name creating. So I got the fun stuff. He got more of the boring work, but I do appreciate him. So shout out to Bryce. Yay. Bryce. Yeah, Bryce. and now you're doing the day to day with, the other parts of administration? Yeah, I'm doing like the answering of the grant. So if somebody sends in a grant, I'm looking over the paperwork, I'm purchasing the products and things like that. Very cool. Very cool. Yeah. How do you find time? Leo has an awesome nurse. Oh. That stays home with him, so, yeah. No, I wouldn't be able to do it without, our nurse, Molly, who is like an angel nurse. Molly, nurse Molly. I've heard good stories about Nurse Molly. Yes. And Leo has a button. Nurse Molly. Oh, nurse Molly has dogs that she's like introduced Leo too. So Leo knows about nurse Molly's dogs. Oh. And that's what he talks about on his AAC. So what types of things have you had grants for? Well, we've had AAC devices, we've had two in the last two months. Nice. Which is exciting. the special tomato chairs, wagons, specific wagons that can help kiddos get around. We've had XL switches, which is specific as well to an AAC device. And that's another way to access the AAC CA switch that then allows the AAC user to scan through the buttons versus having to make a direct selection on the device. Exactly. So like kids who may just have to be able to hit a button, hit like literally like a big. It, they look like big jelly beans. Yeah. Or basically big. Yeah. Yes. And then also another one that we do, it's something that's relevant just to myself, um, well, not to myself many families, but blending packages for G-Tube kids with families who maybe want to blend whole foods for their children and, that can include like blenders, which are really expensive. You have to have specific blenders to be able to blend down food that can go through a G-tube. So. Hmm. Those are the big ones. And I'm so impressed that you and your husband knew right away that this was a avenue that you wanted to pursue and give yourself two. That's just, that's just and so inspiring. Yeah. And such success in such a short amount of time. Leo's going to be turning three. Yes. And so when did you launch Lion's Hope? That's a great question. It was, so he was born in 2022, so we launched it the end of 2023. We launched our clothing and then we didn't recently, we just recently in the end of 2024 started purchasing. Okay. And we've helped, I think we're coming up on 35 families, which doesn't seem like a lot, but that's a lots amazing, amazing. That's a lot for such a short time. Yeah. Help families in Alaska. We've had some here in Duluth, some in Superior, Wisconsin. We've had people east coast, west coast, I love to see how people are hearing about us. Wow. It's like, wait, how did you hear about us? Like, you're from Alaska. How did this happen? Yeah. And it's just cool how, yeah. The good news is spread for sure. Yeah. So that answers my question. Yeah. Like, like yeah. Who is it for? And it's for the. All the 50 states or how did they find out about it? They find out about therapists. There's also a website called Advocacy Abbey, who goes through all the nonprofits that can help. we've helped some international, but we're probably shipping, yeah, it's been, that's been a little bit harder. That might be something that we can do when we get bigger, but for now we're really liking helping everybody that we have. That's wonderful. And when they, what was the advocating one? Advocacy Abby. Advocacy Abby, yes. That's where a lot of people are hearing from us. She's like a social media influencer that commits her time to showing, showcasing, I guess, nonprofits. Oh, that's wonderful. Yeah. And we love getting. The pictures of families who are getting to enjoy, all those, the sit me ups or the, um, the chairs that help kids sit up. Like getting to see them sit with their peers or with their siblings or with their grandparents. It's just been, that's been the best part is like physically seeing okay, we're actually making a difference. So making sure that the donors know that if you are donating, you are making a difference in a child's life. Somewhere. That's really neat. Yeah. So on your lions hope.org, you have a donate button. You can, anybody who's interested can donate that way. But then let, tell us about your upcoming events and other events that have been in the past that your main fundraisers. Yeah, so the big one that's coming up is, our paving the trail for all August 16th here in Duluth. it is at Stebner Park. We're focusing on, Getting families outside with their special needs kids. If you've ever seen a wheelchair, you'll know, or if you've ever used one or pushed somebody in it, you will know they're not all terrain. Mm-hmm. they are meant for really smooth concrete. It. That's it. we are raising funds for a, it's called a huckleberry tandem hiker, and I don't know how to describe it, but I do have pictures of it on our website. But it is basically a, it's not a hiking backpack, it's a harness and you pull your kiddo on the back. Of the harness that has one big wheel and it's able to go up and down and go on. True all terrain. Like you can go to the national parks with these things and Wow, that just opens up a whole world for them. Yes, yes. and my friend Megan has one for her daughter Emmy, who is three going on four. And it grows with them. It's. It can grow up to until they're adults. So it's something that can be for life and it's amazing and they're an amazing, company that we're working with for this event. This event will include something for everybody. If you are in the Duluth area or surrounding areas, we're gonna have face painters, we're gonna have henna artists, food trucks, bounce houses, a DJ and a bubble party. You can do. A walk down Stebner trails as they are all, they're inclusive trails. You can push a wheelchair down those because those are actually concrete. that sounds so fun. Yeah. I'm so excited. Yeah. so when, what's the date again? August 16th. August 16th, 9:00 AM You can be late. It's nine to 12. we'll have everything. We're excited just to see everybody come out and once we know how much we've raised, we can buy huckleberry hikers for multiple families. So we will also be releasing more information on how to apply to be one of those families considered for a huckleberry hiker. And how much does a huckleberry hiker cost? That's like a little tongue twister. Mm-hmm. I know. Huckleberry tandem hiker. two to 2,500. Okay. 2000 sorry. To 2,500. Yes. so that's. Separate or a leap up from your current, grant firm? Lion's Hope. Yes, because we are, partnering with Huckleberry Hiker, we are going to Yes. make that a little bit bigger of a jump and we've talked to Huckleberry Hiker, they said they'd like to make it to one of the events 'cause we want this to be a. Annual thing. And this year they know they couldn't swing it. They reached out, they said, we wanna be there, we just can't come this year. And then once they're there, let's just say they come next year, they actually bring a huckleberry hiker for families to like try and actually see what it's all about. And it, I mean, it's amazing. We have pictures on our website under the paving trail for all, tab. You can see My friend Megan and her daughter Emmy, and her husband Zach, with their huckleberry hiker and just what a difference it'll make in anybody's life who wants to get outside and get hiking with their kiddos. That's really neat. Yeah, and it is really nice to see the testimonials that you have on the website for the different types of equipment that people have shared. Yes. It's, yeah, that's, like I said, it's the best part, so you can see like your money is truly making a difference in a family's life. You are so cool. Thank you. That's just so inspiring that you took this, um, challenge that was presented to you or given to you and you just made something beautiful happen with it. Yeah, no, I appreciate that. We, yeah, it's been amazing getting to see. How Lions Hope has helped other families, just because, like I said, we have one kid and it's hard enough. So imagine adding three more and trying to figure it all out. And it's just, I just feel like we gotta be there to help others. And then starting our, lions Hope Medical Parents Club with my friend Megan, who is very, like, she's kind of the face of that. She's very good with like feelings and emotions and let's, talk about all the stressors. Let's talk about, some of the things that we all share in common, which can be hard for some people. Sure. So how do you. How do you get connected to the medical, complexity group that you have that you're co-hosting? Yeah, so it's Lion's Hope Medical Parents Club. You can find it on Facebook. It is a private group. You have to ask to be a part of it. And then once we say yeah, like, you know, let you in I guess, or we accept your request, you can see all of our events that have, we have going on. We do a lot of play dates. We've had moms night out. we're working on Dad's Night Out. They're very important, but we're getting there. but Megan and I, for some reason, we've only found time to find the mom's night out. but we've gotten together and did coffee and just talked about the struggles and it's crazy. I think our slogan is we get it, like we finally found a group of people. Like they get it. they understand why we're late. Oh, they understand there are stressors and traumas and triggers that we all have that are probably pretty similar. 'cause we've heard the hospital beeps, we've heard all the things in between. So we can connect on a level that others may not be able to. And it's just so nice to feel like we can be vulnerable for once with this group of people. And Megan, my friend Megan, has just really taken over that because she's so open with all of the things that she had to go through with Emmy and it's been so nice to lean on her while I do more of like the Lions Hope stuff. She's taken over the Lions Hope Medical Parents Club and she's killing it. Wow. That's awesome. We've actually. Got a lot of families to come to Masonic. We've had every, when we say like a lot of people, I think there's quite a few families with multiple kids that will be on the wait list, hopefully for you guys. 'cause they, yeah, we're, we've just, I think everybody who's been here can't say enough amazing things. For sure. Good. That's really nice to hear that you have the Facebook community for. All, especially since you have connections across the country, but then if, then also some in-person opportunities as well. are there any age restrictions? You know, we've never had it come up where it's unless you're 18 or under. I feel like there might be some, I feel like we'd like to keep it 18 and under. it's just not defined yet. It has not to been defined yet, which I just feel like we're still so fresh that we're still figuring out ourselves, honestly. And like the whole like international thing, that's something that we're learning too. 'cause that was tough. But we did it once and I don't know if we'll be able to do it again for a while. for the paving, the trail for all, we are looking for sponsors. So we have different sponsor levels or tiers. So we have a $250 tier, a $500 tier, and a $750 tier. All obviously will include different benefits, such as like advertising for. The company that is giving us the money and, that money will all go towards, the adaptive equipment that we buy and also the huckleberry hiker. So we're definitely looking for more people like that. If you can think of anybody, shoot me an email or shoot me a message on Instagram. We're always looking to team up with more people that are, really passionate about giving back to the community. Great. And what is a good email address for them to reach out to you? Yeah, lions hope.org at gmail.com. Thanks. Yeah. Well, thank you guys for having me. I really appreciated it. Okay, so now it is time for Nikki and Tamara's favorite things. Tamara, what is your favorite thing of the day? My favorite thing are clear chiffon scarves. So I learned about the magic of clear chiffon scarves, meaning like multicolored, kinda like the kinds that magicians like pull out of their, you know, their hands, um, at kinder music. So when I was. Um, a young mom, I was able to join kinder music and the movement that scarves gave for little kids that had maybe had some difficulties or maybe they didn't have any. Just created so much ideas for sensory motor movement, for pretend play, for, for joy. We played peekaboo with scarves. You can throw them up in the air and watch them float down. You can crumple them up into a ball. You can layer them in a certain way. You can dance to music with them. It's actually a really great way to have everyone have their own and then join in an activity together. So maybe we're all waving scarves, to a certain song, and so we're watching each other do that. Or you can watch and learn from other people. Like maybe somebody throws it up and then that gives the. parent, the idea or the kid the idea to do that and they're like, Ooh, I wanna do that. And so there can be a lot of modeling with it. So I really like, um. Like chiffon scarves. What about you, Nikki? Well, mine it seems really basic and it is. Um, but it just goes to show you that you don't need expensive, crazy out there toys to have fun and to work on language and to make it exciting. So my pick for today is a ball. Ta-da, ta-da. So just any kind of ball. Um, if you're looking at language skills, you can work on different verbs, you can bounce it, roll, kick, catch, throw. Any of those things to do in repetition are great for teaching those movements and the language that was with it. And then you can add adjectives on onto the verb. So big kick, little kick, fast throw, slow throw. you could also go with locations, you know, throw it up, throw it down, or direction following, go hide this. And hide and seek is another favorite one of mine. You know, hide the ball behind the couch or under the table. And. If you take a turn and you hide it, then the child has to find it and say, oh, where did you find it? Oh, it was next to the garbage can. So working on those different prepositions, um, and it's another really great anticipation game for those little kids. We're ready, set. And then you wait for them to initiate go or some kind of response to say, yep, I'm ready for this. I want this to happen. Mm-hmm. So my pick is a ball, and I love too that you can use the verbs as a preference. Like, do you want me to bounce the ball to you or throw it up? Mm-hmm. And so makes that need for communication. 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.