Episode 28: A Parent's Compass: Navigating Autism with Angela Carroll

Hosts Niki Lampi and Tamara Pogin speak with Angela Carroll, a mother of four autistic children. Angela shares her family’s journey with the clinic—from early speech delays and rapid progress through play-based, parent-involved therapy to later evaluations and individualized supports for her twins. She highlights the importance of trusting parental instincts, advocating for services despite long waitlists, and pursuing supports beyond diagnosis, including IEPs and community resources. Angela also discusses navigating limited services, changes in ABA, homeschooling, and her advocacy work supporting other families through fundraising and peer guidance. 

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. Today we are welcoming Angela Carroll to the podcast. Angela is a mom of four autistic children, ranging in ages from six to 21 from. And one diagnosed child because her children span a larger age range. Angela has a unique perspective of bringing one child to our clinic when it was the Scottish Rite Clinic at our older facility that is now our parking lot. But she also got to experience the new clinic and our transition to being called the Minnesota Masonic Children's Clinic. Welcome, Angela. Thank you. Glad to be here. Hi. And we were both just saying that even though we've known each other for more than 10 years, we are not old. No, we're not. So Angela, how did you first hear about the Masonic Children's Clinic or at that time, the Scottish Rite Clinic? It's actually funny because I heard. About it from a family friend. I had no idea this place even existed. At that time when we got under my, 13-year-old diagnosed, he was around two. And at that time it was still kind of like taboo ish to be diagnosed. I think we were still at like one in 68 kids. Mm-hmm. And so. At that time the doctor was kind of just like, here's a pamphlet. Oh, and that was Google it. That was like 2013, 2014. Yep. Yep. So it was like very much I was on my own. We did do, a couple, I think it was a couple months later, we did, Polinsky speech therapy and we did that for a while. And it was okay. Didn't see much of a change. And then all of a sudden I had a friend I was talking to, a family friend, just frustration of he's not speaking. The doctor said that he might never speak or he probably won't ever speak, and that was, that was really hard to hear. And then the family friend, said, Hey, we have another family friend whose child goes to Scottish Rights Clinic. Have you ever heard of it? I was like, no, never heard of it. And so she gave me some details and she's like, I think you could just call, you don't need a referral and you can just get on the wait list. so, I looked it up and I'm like, why has nobody told me about this place? So I called and I got on the wait list, and I think we were in three months later. Oh, nice. Yeah, yeah, yeah. We got in pretty fast. So it was, it was a nice train. We still did both. We still did Polinsky and we came here. And so it was, it was a change. I think it was a good change because we got to, I got, as a parent, got to go into the room with him and when we were going to Plinski, that just wasn't the case. Parents weren't really allowed back into the therapy rooms. Yeah. Just a different model. Well, and I didn't get to see what was happening, so I could bring that home. Right. Or I could help that way. And so it was just, it was different and it was nice, um, to go in there. And then I think also too made him more comfortable because I was in there and I don't know, he took to Tamara right away. I'm not joking when I say that. My son was saying words in a month. Wow. Not even joking. It was like. The best thing, and I could cry right now. You, you found the, you found the key? Yeah, I did. It was, I, I don't know. I don't know what it was, but it was a mixture of a lot of things and I think it was just the right. The right thing at the right time. And yeah, I owe a lot of his success to Scottish Rite, Masonic sound and to Tamara like a hundred percent. So, yeah. Well, she's amazing. She is amazing. Well, thank you. You're welcome. But so, but I think what you're saying is right, it's like, it's so interesting to hear that you heard about from word of mouth. We've talked about some families for even from not as long ago as you, that word of mouth is still our strongest, Referral source referral. Oh yeah. And so that's really interesting that you found that out. And it was really cool that someone decided to bring that forth to you so that you could join. And, and like you said, you were doing stuff with home right away. So it wasn't just me, it was probably me seeing what he needed or me seeing what he enjoyed. Like what was our in is what you were saying. Mm-hmm. and figuring that out because he really was. Trying, he was like all over the place and everything, and his energy was high, right? And so we had to find things that. We could do with, you know, a very energetic three-year-old. Mm-hmm. But still have lots of practice. And so at the time, at the Scottish Right clinic too, we had smaller spaces, but we did have one nice large motor space. And I really think that that was one of the big things that really worked is like just thinking about kids that have no words, but a lot of energy need a lot of sensory needs. We need to be able to let them move to learn. I a hundred percent agree. And I, I do feel like that's where a lot of that, came from because when we were going through the speech therapy at the other place, the small therapy rooms, which, you know, it's fine. Um, but I just feel like I said, like that was just like the perfect storm. Mm-hmm. I just feel like that was really what did it for him and I. I don't know. I, it's just crazy how it all, mm-hmm. Happened that way. Mm-hmm. It's just been great. Do you think organizing his body first helped the language come along? I, I'm not sure. I do know that it felt like he's had the words. He's, you know what I mean? Like, he's had the words, he knows what the words are. It was just finding that pathway mm-hmm. From his brain to his mouth. Mm-hmm. And the way Tamara did the play therapy with him, it just brought that out right away. I, I just, I can't even explain it. Yeah. it was really exciting when it was, when he started to use some words to advocate for himself and to say things that, what we were playing with. But also too, he went from maybe, As he started with me, he was getting more and more therapies. 'cause you started with the schools. Yep. some of it was what they call the dose or the amount of therapy because he was getting it in multiple areas and then he was able to have opportunities to integrate that into different settings. And I think that's part of it too. Yeah. We were doing five days a week of therapies for eight months. Wow. That's intense. Well, At the time, I was just really naive about everything. I had no idea what autism even was, and I was like, is he gonna, when is he gonna talk? She's like, well, I don't think he ever will. And I'm like, okay. I wasn't taking that, sitting down. I mean, obviously I know, you know, there was a possibility. He may never find his words, but I was gonna do whatever I could do to help him. Find his voice. Mm-hmm. And so that's, that's what we did. And we just worked it. He did the work. I just got him there. That's the way I see it. So. Yeah. Well, you coached him along the way. Yeah. Yes, I did. I was his biggest cheerleader. Yeah. So we talked a little bit about what hunter's, main needs were. When he first started at the clinic, he had an autism diagnosis. he had zero to maybe three words. Mm-hmm. And then, and then he came all the way through his, like, kindergarten type of gear. And we started to do some things with another peer. Do you remember that? He had a little friend that he was going to the therapy with a little bit. Yep. Because he was getting language at that time, but sometimes his language didn't, he didn't have all the language to do all the, the peer negotiating for play or for, trying to ex express his emotions. And so he was like getting upset and things like that. So we brought this other peer in who also needed some language stuff, and they played Games and they did obstacle courses and they still had individual therapy each of them. But I really enjoyed that. That was like one of the first ones where I'm like, I can do groups. Yeah. It was, you know, and so that was one of the things that I know that we did for Hunter. Mm-hmm. Near the end. And then he went to kindergarten and was continued to be supported by schools and Yep. Yeah. Yeah. He was still doing, I think. I don't, no, I think we stopped doing speech therapy at Polinsky at that time. Just stick with here. And then we did like OT and PT outside of school for a while. And then, you knew who to go to, a couple years later when you had your twins? Yeah, yeah, yeah. They were, when were they born? So they were born in 2018. They were not expected, so they were born in 2018. and so I was already, versed up on what I should be looking for, if there was anything off with the girls. And there was pretty much, milestones weren't really being met, but they were, they were premature too. but I still knew what I was looking for. And so when I brought my first concerns to their pediatrician, he kind of was like, no, I don't. And I'm like, yeah, but I still want a referral. you really have to be an advocate for your children. Even sometimes the doctors aren't right. And then what I mean by that is about six months after we finally got our diagnosis, went back to our pediatrician. He's like, oh yeah, now I see. I see what you were talking about then. So. You know, sometimes even doctors can get it wrong. Mm-hmm. You know, and he even apologized. He's like, you know, doctors aren't perfect either. So it's just to go to say that you really do have to advocate for your children. If you feel like there is something off, there is no shame. And asking for a referral for an assessment. Mm-hmm. That doesn't mean anything. A diagnosis can be just a diagnosis that maybe nobody else even has to know about. You know what I mean? But to get your child help these days, that's really important. And so, at what, I'm sorry, at what age did you do that at the 12 month or the 18 month or? Um, I think I asked for a referral by the year, the 12 month. By the one year because they were, had official diagnosis by the age of two. Okay. Through Caravel. Mm-hmm. Because the line for Essentia was ridiculously long. Yeah. At that point too. and then it wasn't even a year after that where we finally got the big diagnosis from Essentia. That goes through all the other things. Caravel just does an autism assessment. They don't do like the A DHD or, or intellectual disability or anything like that. Well, and I think that's such an important message. trust your gut. Yeah. And if you have concerns or questions, keep asking. Mm-hmm. Keep advocating. Yeah. There's nothing wrong with that. Mm-hmm. I don't think there's anything wrong with that at all. And even if it ends up being just for your own peace of mind. That's what I mean. I think that's, we all need that. And you know. Parenting is hard. And I think if you have that question in the back of your mind, you need to have that settled. Yeah. Why wouldn't you wanna know the best way to help your child if they're struggling with somebody? Right. Something, you know what I mean? and an assessment's just an, just some testing and it's, it's super simple, especially for a young kid. And it's actually mostly on the parents' questionnaire that you're filling out at that age. Yeah. Yeah. It's pretty easy for the child. It's really easy. They do, they do some IQ testing, but it's like blocks and stuff. Mm-hmm. It's super simple. Mm-hmm. I've watched all three of my kids do it a few times, so it really wasn't that difficult. And I, like I said, I went to the testing too, and it really was not difficult, so. Mm-hmm. And so you said that the girls got the diagnosis around 2020, or I would, you said just before there two? Yep. So. I wanna say probably 20 20 20 or 2021. I really don't remember. did the pandemic get in the way of that a little bit, do you think? I think so. My, my time since going back is. A little crazy when you have twins, it's Well, twins plus the pandemic plus their kids. Yeah, well, so yeah, they were born, well, they were born in May of 2019. So the pandemic, I think, had already been, by the time we were getting official diagnosed through Essentia, I think it was well over, twin. It was about the time. 20. Yeah, it was about the time where we were figuring out, okay, like things are finally starting to calm down. So I think by that time we were past that. Because the reason why I asked is that, sometimes we've been talking about how for to get your child diagnosed, it's really important to get a referral. It's important to ask because sometimes the waiting lists are long and they've kind of always been long, and some people are like, oh, it was the pandemic that, that kind of clogged things up, which was maybe a factor. But it's also just about access. Yeah. so you said that you had your girls diagnosed through Caravel. hunter was diagnosed through Polinsky. Mm-hmm. And Dr. Ham. and so we have a few places here and we definitely want to use this as referral partners. Right. Um, but then some people, parents have had to go to the cities Yes. That's just kind of, it's kind of been constant. So even across the different generations that's been kind of happening and it's something that we're still working on in this community. It's something that is still very prominent. the waiting list. And I don't think it's just for us, our community, I think that's in a lot of communities. but it's unfortunate with our big new hospital and how big Duluth has gotten. one would hope or think at some point in time that we would be able to, be on a, at least a six month wait list period at some point. Mm-hmm. Because even going to the cities, a lot of families don't have that option. Yeah. a lot of families don't have the ability to do that. taking time off work or transportation or, yeah. Transportation is a big thing, driving to the cities and, you know, all that stuff. If you have other kiddos that need, daycare or white, there's just so much that goes into it. So, so you definitely you contacted the clinic, I think even before the girls had the official diagnosis? Yes, because their speech, they did have speech delay and that was the one thing that I was more, concerned with because. Learning back from when Hunter first got his diagnosis. The one thing I was told, even if he does get a diagnosis, the treatment plan stays the same. Yes. So that is one thing that I also tell families. I've had a lot of families come to me and ask me, Hey, you did this with Hunter, like what could you recommend for me? And then I always say, ot, occupational therapy, speech therapy, all those things. 'cause that's not gonna change the therapy. Status going forward. Even if they get that diagnosis, that diagnosis is to open more doors as they get older. and for school IEPs, you know, you really, really need that. any help outside help, if you don't need to file for social security or waiver programs, which is all things that I've had to figure out on my own. Mm-hmm. That has been very, very difficult to navigate. But I'm glad, I shouldn't say I'm glad that I went through it, but a part of me is like, I'm thankful. That we know what I, what I know because I can pass that information onto other families that are struggling and don't know. Because when your child is first diagnosed with autism, they don't give you any of this information. They don't say, Hey, here's the some, I shouldn't say that. They don't. Some therapists do, like, after you get the official diagnosis. Dr. Ham was really good about that. He's like, you should do, you know, X, Y, Z. but at the time, like the doctors didn't gimme any information, nobody else gave me any information of what my next steps. Could be, should be, getting your child to state social worker is important because they can help with IEPs in the school and making sure that they're doing what they're supposed to be doing with your children. wavered programs or services, if you don't want, if your child is, Far enough on the, uh, spectrum and, is, has significant autism and needs to be in maybe a group home or something, but you don't want your child to be in a group home and you wanna be the one to take care of your child. There's wavered services that it allows you as a parent to stay home and take care of your child and get paid to do that. so unfortunately with Minnesota having this. Stuff that's going on right now. It's great, by the way. Mm-hmm. That's very unfortunate. It's, you have to really jump through hoops, but I mean, the people that need it can still get it. Mm-hmm. That are, that are qualified. So there's testing you have to go through for that. But I mean, it's there and a lot of families don't even know that. Right. There's resources out there. It's, there's so many resources in the state of Minnesota is actually really, really great about it. But finding those resources and a lot of these families just had no idea. Mm-hmm. Yeah. So I've actually helped, uh, quite a few families. So, oh, they're lucky to have you out there. Yes. Helping them advocate for their kids. Yeah, definitely. Thank you. And I do like what you said too about, it's like you see a need and so just go ahead and get the speech therapy and the occupational therapy and. And, uh, that's definitely something that we as a clinic has had was like, we don't need a diagnosis to come here. They just have to demonstrate a need, and so then we can see them. And I think a lot of people don't know that either. As I had a friend was like, oh, well he doesn't have his diagnosis yet. I was like, doesn't matter. Doesn't need a diagnosis to get help for speech therapy. Yeah. I mean, that is another step to help understand speech, but most of these places can. I mean, they're not gonna be like, I think your child is autistic, but they're smart enough and they can see when they're, going through therapies with your child that, okay, there's something else going here. There's a barrier or whatever. Okay, we just gotta. You know, fix things to mm-hmm. Get the therapy's still the difficulties in communication. Exactly. Regardless of the diagnosis. Yep. Exactly. Exactly. Yes. So, with Kylie and Kaitlyn, I guess to see Kylie and our, former, speech pathologist here, Nat or Natalie mm-hmm. Got to be with Caitlyn and it was so fun. These little quirk things that I remember was that, I got to be called Nat a lot because Mart, Mart is one name. We were marinette and, uh, they still say it when we drive love. I love that Mar because she would say, we're gonna go see Mar Nat. And so then they would be like, Marinette. Yeah. Yeah. And it took them a while to separate that, but they got it. They got it. so that was fun. And so, and, and then it was very interesting too, to have that opportunity. We saw the girls together sometimes, but then also to give the girls just alone time with mom and a therapist because we were really able to suss out their. Unique differences. A lot of times with twins, people bump 'em all together. Yes, both girls had a language delay. Both girls were processing language differently, but they had very different needs, personalities, emotional regulation capabilities, and they also showed differences when they were together, meaning that. It was a little harder for them to be emotionally regulated together than apart, and so we definitely wanted to work with you. And so we actually had Sarah near the end, Sarah, our occupational therapist, as a consultant to help with while they're home together. Most of the time. So we need to not put these girls in a vacuum and being like, oh look, they're meeting all their goals. Well, yes, but then at home you're like, at home they get frustrated or mm-hmm. They, they can use their words in this situation when everything is like visually sequenced for them, but then when that is gone, it's hard. Yeah. And so that was really interesting for me to be like, we're looking at the whole family. And we wanna help each girl make their gains. And they did. Yeah. But then also being like, well, yeah, but when we throw 'em all back together. Yeah, I know. What does that look like? And that took a lot of time for you too. You did a lot of different things as your family, so the girls would have opportunities to regulate and had their own space, didn't you? Yeah. Yeah. We've done a bunch of different things, through that time period, but they are so different. So completely different. No, it's really easy to see and the older they get. And so we made, this year we made the decision to, separate their classes, Uhhuh. So they both have different classes that took a while to get used to. Yeah. What did they think of that? At first they didn't. Yeah, they not wanted no part of that. But, one really liked it. And the other one was like mother hen, Uhhuh. Yeah. but now it's great. So. It was really smart move to do that way. Well, and when they were here, they also participated in some of our group activities. Mm-hmm. So that would've been an instance when they were together. Yeah. Yeah. So music, they still do that at school too. Okay. Like, um, they do, I think they do gym together. Um, they do lunch together and I think they do like math or something together, so, yeah. So I mean, they still get to see each other and their classrooms are literally right next door to each other. Oh, nice. So, I mean, yeah. Yeah. And that was what was nice too. she was saying like, yes, they did get a chance to do, some group things here. So either, like sometimes like in the summer times we have summer story time, and so they would come to the story time and they would be together for that. And we also tried a couple of music and movement groups, which was where we use music as the language vehicle to, to teach more language and turn taking and things like that. But really what music and movement has happened from. When they did it. And also currently it's really an emotional regulation group 'cause we wanna teach kids. 'cause again, at this time the girls were about four. Mm-hmm. And we knew that they were heading into preschool. And I always tell parents, kids have to learn how to be in a group before they can learn in a group. So the point of music and movement sounds really simple. Just being in a group. Yeah. And staying regulated. Mm-hmm. That might mean having to wait a little bit. Everybody gets their own scarf, but you might have to wait a second or two that kid might have gotten the pink scarf and so now you have to, you know? Right. Those kinds of things that can then, cause. Dysregulation and then we don't learn the song so in a nice small group, we're like, well, we'll take the time to be like, and we'll get you a pink scarf. Or it's her turn first, then your turn, and those kinds of things. And so we would have little blowups and I'll never forget those groups. They were hard on, they were hard on the parents because what we did is we had, we had one or two therapists. Mm-hmm. And each child had a. Parent. And then that's when we discovered too, that some, that at least for one of the girls, they did better without mom in the room. Yes. More cooperative. more attentive, less about the jealousy of, I'm competing with my sister for a mom's attention. But then, it was the opposite for the other one. Mo they felt more supported by mom and you used in, in your language that you modeled was easier for them. So that was interesting to figure out too. 'cause then a couple years later when you did stage play with us. Yep, yep. We had both girls try it and then Well, you could definitely tell which one was which at that time. Yes, you could. Caitlin. Was Caitlin Kaitlyn's the one that needs mom? Support a hundred percent. Kylie can do without it. But then she, she does struggle because I think sometimes she just gets bored with things if they're not super fast paced and then she wants me, and then it's a whole thing. But yeah. And so for stage play, which is our, acting class that we do with the Duluth Playhouse, and it's, that focuses more on, uh, emotional awareness and, collaboration with other peers and things like that. Kylie was the one that was like. This is me. I get to be big. I get to be the center of attention. This is awesome. And Kylie was like, maybe not. Yeah. and we were able to honor that, which was really cool. And and so that was really neat that we was like, yeah, honoring their differences and still, Kylie was able to move through that and really be pretty successful that, yeah, there were days that ju like you said, she was not in the right space, but she pushed through. She really did. She, she pushed through to the end. I mean, it was a little difficult, but she did it. She did. So, I mean, as lead, as long as she finished it, I think that that was a big, a big win. It was a big accomplishment. So, yeah, I agree. Yeah, it's interesting to me listening to the progression of this since I, I knew you when you were here and I knew the girls, but I didn't work directly with them. And it's so interesting to hear the, the start when it was, try to see them individually and get them regulated and work on their foundational skills and then bring it together and that's the next level up. And working through that piece and then other. Groups where it starts to be just like you said, be in a group and just be Okay. So from alone to sisters together to sisters together in a group mm-hmm. To sisters together in a larger group Yep. With a more abstract, um, concept for stage play. That's really, that's really cool. Yeah. Yeah, yeah. They've come a long way, that's for sure. They have, they have. so we kind of give an overview of the, of the, at least the three kids that were served here at the clinic. Mm-hmm. But. What were some of the things that you thought about when you thought about our treatment approaches or the way, that your kids liked coming to the clinic what do you think from their, through their eyes, what was it that they wanted to come here for? What, what do you think that was? Uh, I, I just think the versatility, the different things. I think the, the fact that things changed weekly wasn't like, a BA therapy is like the same, same, same, same. Um. And I think for the, this, the change was, was good for them. Also, you talking the fact you about the themes and the, and the games and the Yes. Yeah. The different things that we did every week. mean, there was games that they liked. I'll still never forget the game that Hunter liked with the treasure, ch treasure chest. I don't remember which was that it was his favorite game ever. And he always wanted to play that one game. She's like, well this week we're gonna, if you do the X, Y, Z, you can play the game. Oh. So, um, yeah. And it was different every week. So I think that that was important and they liked that. Because I think changing up predictability and change in younger years is good, for them to, know in life that's gonna happen. and not saying that it's a good thing all the time for them because sometimes it, it does throw them off. And, we've had lots of breakdowns over that. But I think that, It's a good thing too sometimes. And also, this type of therapy is different than the majority of therapies for these type of kiddos because the parents are allowed to be there and we're allowed to, not only are we allowed to observe from the observation room, but we could be in the room if, need be for whatever reason. There's been lots of times where I've had to go into the room and join in, for whatever reason. I think that is, sets it apart from the majority of, therapy type services for these types of kids. Yeah, I think that you're right, like there is different, you took on different roles for different kids at different stages of their therapy. Sometimes it was, you were their emotional regulation. Person like you were like, just letting, letting you know Hunter sit in your lap. While we were working on some stuff that helped with his attention, working on harder stuff. you might've been like a play partner, you know? Yeah. And I was modeling and saying like, this is the stuff you could do at home. And so these are the words you use or the sound that you do it. And and sometimes it was. You were on the other side of the room and going, come in and going, eh, and the girls were like, I forgot you were watching. Bomb. They, when near the end of the, the, yeah. I'm thinking one sassy incident incident. There was definitely, uh, I was like, I, I'm watching you. Yeah, yeah, for sure. So that's, yeah, so lots of different roles and so it was as I was learning from you about what your kids needed and we were learning about. All of their different needs and how to step them forward. You were also learning from me and Natalie about, the different strategies because each girl was learning differently. It wasn't, it's not a, it's not a one size fits all approach. Exactly. And, And there was definitely some different things, especially, with the girls' language because they were, you know, like one was using like more scripted language and one was, literally letting the other sister talk for her. Mm-hmm. And these are things that we worked on. Yeah. Yeah. Which are not uncommon. Twin things. Yeah. Yeah. It's hard and it's hard too 'cause it's like, okay, what part of this is just a twin issue and what part of this is what's going on? We did a lot of your brain. You know, I remember Natalie doing a a lot of research on twins about that because at first we weren't sure what kind of language system they were using. Were they more gestalt language processors using like that Whole to part approach or were they just, late talkers that needed, that single word analytical approach where we just build words up and they kind of, I think it was a little bit of a mixture of all of it. And I really think it was, they were kind of, it still is, they were kind of a blend. Yeah. Where one was maybe a little bit more like it's using, being, using scripts. And then the other one was more about I need to build it up. And that was very interesting to be like, oh. Mm-hmm. We have to use different approaches. Okay. Yeah. And it's still that way. And they're still the same. Kylie still scripts, Uhhuh. Um, Kylie will do it quietly though, and I, but I can hear when I tell her something, she'll, she'll. Echo. She copies me, but she'll do it. She'll whisper. Okay. And, you know, process. And it helps processize. Yep. Yep. She wants to remember things and that's how she does it. And you know what? Hey, if that's how she does it, that's how she does it. Like, and Caitlin also still needs to build up, but she needs it in a different way now, if she needs something or if she's asking a question or if she's, If she's elevated, I cannot answer her in an elevated way at all. So we're working on that. So again, that's that whole Yeah. Mutual regulation thing. You're like, oh, I need to be the person that get that, that she catches the regulation from. 'cause if I'm also very. She's just gonna, if I'm activated, she's gonna grab it and go and run. Oh, she up on that? Yep. She's even said, can you say it nicer? Oh funny. It's not that I'm not saying, or can you not talk firmly to me? 'cause she'll always say, why are you yelling? I'm like, I'm not yelling. I'm speaking at you firmly so you can understand what I'm saying. Can you please not talk to me firmly? Okay. Well, that's really great. They're smarter. They know what they need. It's, it just sets that anxiety piece in her off for whatever reason. And so I really try really hard. That is a, that is a hard thing. Yeah. 'cause like that's, but that's great that she's using that self-advocacy. Yes. Well, that you recognize that and don't approach it as, no, I'm the parent. I'm going to talk to you how I wanna talk to you. You can't need to listen, you can't, with her or children like her. You just can't because you're not gonna get the response that you need. Mm-hmm. Or you know what I mean? It's just gonna be a push pull, right? It's not meaningful to them and it's not gonna do anything. And it's only gonna make the situation where it's gonna cause more anxiety. It's gonna cause a big, big meltdown because we've been there. so I've just learned through process, and I'm not saying that I'm not perfect. I am not perfect. We still go. We have, sometimes we, it still happens. But I do my best for it not to so well, and we just have to like get a real picture of sometimes. when we're all together, what one person needs or what one, you know, they might need some quiet time and the other person's like, I need to play my toy at the loudest I possibly can. And it both is a real legitimate need at the same time. It happens a lot actually. We, I just had this conversation with my mom. that's exactly what happens. And I've told the girls, I said, you guys both need me at the same time. And I, and I I see you, I hear you. I know that you need me. But I can only pay attention to one of you at a time. And that's where the twin thing comes in after that because it's like, oh, you're not giving me attention. You're giving her attention. Well now I'm gonna be mad and I'm gonna throw a fit over here while you're trying to talk to her. And now she's gonna get mad 'cause I'm crying and you can't hear her. And now you have to give me attention. So it is, it is so difficult. And then you throw the other children in the mix. Yeah. So you got a hunter who needs something at that same exact time. Mm-hmm. So it. It gets really difficult. Really difficult. So, so that's, when you're talking about some of the other supports that you've put in, you've really relied on your mom and is she, she's even been a paid caregiver for, right? She has been, yes. In the past. She no longer can be Okay because she is a, what do I want to call her? She's the kryptonite. She's um, she's grandma. Yeah, she gets to be grandma. She's grandma. And so when grandma comes around, the girls are completely dysregulated. Any kind of regulation goes out the window. So we are trying, I am trying to. Get that under control, get it fixed, trying to get the girls on schedules and trying to get everything, you know, figured out. But as soon as she comes over, all that's out the window. So she hasn't been able to really come over so much, which she's really sad about. But I mean, it's hard 'cause it's like we have to have kind of a strict schedule of regulation through the day, or one bout of dysregulation can throw off our whole day, even our night, it goes into our bedtime routines. Mm-hmm. And that's a whole thing too. So. It, it's not ideal. And I, I know it sucks and the girls are getting older and I'm sure they'll grow out of probably this piece of it and she'll be able to have that relationship back with them. But right now it's literally pretty much only me doing everything. Oh, so, 'cause like, 'cause we've been doing stage play, you are trying to like have like, um, the girls have different nights with their dad. Yep. So that he could have one-on-one with them. Yep. We were doing that. Um, and then he had to change his work schedule, so we had to go. So we're just strictly back to me during the week, which actually did help with our regulation during the week. 'cause they were going back and forth and back and forth. And then we figured out that, oh, this was actually not super helpful for them. So them just staying home during the week has actually been. Really, really good and has actually leveled things out. Even the teachers at the school have noticed, like their behaviors have gotten so much better at school from not having to go back and forth. they still go on the weekends and stuff like that. Yeah. But, but it is the, mainly a majority of me doing the majority of all the work, this type of stuff throughout the week, the regulation, the, making sure we have schedules and, trying to make sure that they have everything they need. To be successful. so yeah. And then I'm also doing parent training. so the girls did a year of a BA therapy through Northway. Mm-hmm. and they did amazing. And just so anybody knows, a BA therapy is not what it used to be. Trust me when I say this 'cause I was hugely against a, BA therapy when Hunter was younger because when Hunter was younger it was different. It was. I'm just gonna say it was considered abusive in my mind, and anybody might have a, a different opinion and that's totally fine. But if anybody goes back and looks at what a BA therapy used to be, it was nothing like it is now. parents weren't even allowed anywhere near inside facilities at that time. and, Northway has invited me in while they've been doing the girls' treatments and stuff, so. I was, they did really great with my girls. They, it is just not what it used to be. So it's been really good. and they were so regulated. It regulated their nervous system so well, they did so good. and this was, they did that for a year. And that was before the year before kindergarten, right? It was, no, they were going into school. So they were just going into kindergarten. So it was right before kindergarten they started, and then what we did is we did two days a week of. N Northway and three days a week of school. So we did every other day. So Monday, Wednesday, Friday was school. Tuesday, Thursday was Northway. Was that a hard transition for them going back and forth? I don't think so because they didn't know any better anyways. Mm-hmm. They didn't. I think it would've been if they would've started school and then we would've transitioned into doing both. I think that probably would've been harder. But because they didn't know any different and they were already doing northway. And then going to school. They loved the school piece. They loved the social interaction, they loved the people that they've, I have friends that work there that they know and they're friends that they've see cousins and stuff, you know, go there. So they loved it. So I don't think, I think if it would've been the other way around, it might have been a little bit more difficult. Um, but because we did it the way we did it, I think that was really helpful. And so they gained a lot out of that. Um, and they graduated a year later. So, and now they're awesome. Full time in school. So yeah, they've been doing great. And so you were talking about that they, um, Northway had some parenting classes, some, some strategies that you would, that they taught you. Yep. So separate from the sessions of the girls. Yep. So they graduated and then I reached out about three or four months ago. I was really struggling, um, because I've literally reached, I had lead reached a point where I was reaching out to anybody that could help us Uhhuh because I was, I felt like at the end of my rope of what I could do, and I was exhausted, emotionally exhausted. I was just like, I don't have anything else that I know that I can figure out to help. We need help. And here's the other part of this that really just stinks, is that even though it's 2026, the help is still scarce. And so when I reached out, I literally had a dead end of every place that I could potentially ask for help for. but Northway was like, we can't admit them back because they don't have the need for that. However, we will assist the school, the teachers, we will come train them if they want. They can attend seminars. We will train you. To better help equip you with whatever you might need going forward. So that's what I've been doing. I've been doing parent training, when they've been teaching me, I've been going through a handbook like literally almost like school. a lot of the stuff we've already do and I know, but it's still nice to have that support. So to have that affirm too. It's so nice and organized. Yes, and they are organizing. I am just not so like they're making, right now we're doing social stories, so they're making the girls social storyboards, which I think is gonna be super helpful. And I tried to do the social stuff myself. Mm-hmm. I don't have the equipment to do all of that stuff, and I just didn't know what to start. So they've been really, really awesome in helping me with that. So, yeah. That's incredible. Yeah. And what do you do to take care of yourself? I mean, you're always giving, giving, giving to these kids. I mean, can you, uh, not really, to be totally honest, I. Try to do the best to take care of myself. I was going to the gym all the time, and then obviously during the summer I can't, so I built myself a home gym, which is very a, a good home gym. so I lift weights, I do cardio all in my home, and I eat very good. I take it very good care of myself. I try to get enough sleep. I take supplements, I try to take care of myself in that way as much as I can. I do therapy. I go to therapy. I do, I guess the most I can for myself. I don't get a lot of time to myself, like away outside, but I think, that's okay. I'm doing the best I can for my kids. This is the way my brain works. Like I'm okay with it. Mm-hmm. I'm okay with it as long as they're safe and I'm doing for them what I can and I am trying to do for me. But I put them first. Mm-hmm. You put them first, but I love that you are. Recognizing what a big piece taking care of yourself is too. Oh yeah. 'cause you can't continue to give that level of care that you are. Yeah. You know, if you don't, if you don't feel good. It took me a long time to realize that as well. I ran myself completely ragged because I am a kid's first person. not just because I feel like, oh, your kids should be first between, before you know anything else. I have kids with special needs. Yep. They absolutely need to come first. Because I am their advocate. I'm their voice. They're not gonna get that from anybody else. So. That's just the way I feel, but there was a long time where I was literally running on empty and I was like, I gotta change. I gotta do something different. So I made sure to make sure that I do take care of myself, and that's important as well. How did you start that? I think a lot of people will be listening and thinking like, yes, I know I need to take care of myself and do these things, but what's that first step? I think just recognizing the where like, okay, what am I doing with my life? I am. Taking care of my children and my home. But is that my identity? Like I think that's a big step. 'cause that was my only identity and I'm just like, there's gotta be more to my life than just that. I mean that is very obviously number one and very important, but I'm like, what can I do? To make myself happy and feel better. I started with therapy. I just started with therapy was super simple. It was easy to do what the kids were in school. and then I just went from there. I started eating better, drinking more water, going for walks, getting outside, making sure that you get out of the house is very important. I don't care what it's for. Go to the grocery store and if you can't go by yourself, fine. Take 'em with. I learned that the hard way because taking twins to the grocery store is impossible. But if I have to, I make that, that I make it a very short grocery trip. Uhhuh only, necessities only what I need for dinner. But I think, um, just even, even getting enough sleep and I, I know some of these things, people would be like, oh gosh, I got a child that still gets up throughout the night. I can't sleep. I get that because Hunter and Kaitlyn we're both that way. Kaitlyn still. Barely doesn't sleep throughout the night, so I get that not being able to get that sleep. Well get, make sure you're getting enough water throughout the day. Get yourself some multivitamins. Vitamin D we don't get, if you don't get outside enough, get some vitamin D. You know, there's little tiny things that you can just do and, work your way up. You know, doing some, if you can't get to the gym and you really wanna work out, you don't need a full gym at home to do that. You can use body weights, you can your body weight. Um, you know, uh, YouTube has free videos on stuff like that. And I, I've, that's where I've been, that's where I started. I really just. Needed to do that. And it's so good for your mental health, even for a walk, you know, stuff like that. So, yeah. Yeah. Doesn't need to be a five mile run. Nope. It doesn't just go for a walk. Yeah, exactly. That's huge. Well, that's cool. Yeah, it's like, like, yes, advocate for your children, but also some part of that is like knowing that where you need to be. I like that. you talked about, helping several families, from your experience where you get to be one of the experienced bombs mm-hmm. Um, was there any, like groups that you were a part of or like, how did you, how did these people find you? I know that you've done a lot of different things like with the autism walk and deterrent things. What, what kinds of things were, or that, for you to be the connections? I think it really stemmed from when we did the car show. So we did the Autos for Autism car show. we started that. We haven't done it in a couple years. 'cause after I had twins, that was just, just became too hard to do those things. but I think about three years before that, so I think I started in 2016 or 17 until 2019, we did the car show. So we did autos for autism, my brother and I, and, we raised funds and we donated here. Mm-hmm. and, A lot of people who come to me come to me from that. knowing that I was a, a self-advocate for my own children, I talked a lot about it on social media. You know, all my friends know that I'm passionate about this. And so, you know, if they have friends, that might have questions or if they see that there might be some issues, they just refer 'em me. And so I've gotten e emails or messages through social media of people that I've never met before, but I, I have no problem with that. I will take, if I'm busy, I will take time outta my busy day to sit down and, and write out a thoughtful message or have a conversation with somebody that wants to talk to me on the phone, like, Hey, yeah, absolutely. This is. X, Y, Z, this is what we did. This is what I think would be, best. Or here's the services that we used, or here's the services that you could potentially use. Like even, my cousins, recently got their children diagnosed through Carville because they were just stuck and didn't know where to go. And so I was like, well, I know you guys are on the wait list. You could go here for a diagnosis if that's something that you need, feel like you need right away. so yeah, that's basically, it's basically word of mouth. Well, it's been working. Yeah. And I, I do think that's interesting too. It is so awesome to have, you and then some other advocates where. It's like, it's one thing to like go on a website and know what you have to do, but like to have it translated down into we are living in the same community and this is what this community has access to, is so invaluable and also so hard to grab and to find at the right moment. Because, there is stuff on the minnesota.gov thing about how to get A-A-E-I-D-B-I services or how to get a social worker, but it's just a little more daunting when there's pages of on pages of mm-hmm. Of, navigating that, yeah. A nightmare. And especially if you're somebody that's also neurodivergent, that's really, really hard to go through. I look at that page and I'm like, words are all over the place. I'm like, I cannot figure this out. So yeah, it's, it's nice to have somebody that's also been through. The systems and have gone through it, that can actually explain it to you like, Hey, here's what we did, here's what you could do. You know, getting a state social worker is always number one, going through min choices assessment for those things. That's, you know, there's nothing wrong with getting a, an assessment in any rate because. You do or you don't, you know, you can or you can't, you know, type thing. So Yeah. Yeah. Where the, where that, where those, um, qualified people are making those, right. Making those choices and figuring out, doing the assessment and figuring out they know the law or the Exactly. Or the rules. Yep. And so they're like, okay, this is how your child fits in within these categories, because then you read the categories. They seem really vague to me. To me, they're very vague. Um, they are very vague as so if I wasn't doing any of the services that I am now, I would never think I qualified for any of it. By the way it reads. So I actually had to have the state social worker go through, oh gosh, no. Like you guys qualify for X, Y, Z, you know, years ago. And so it was nice to have that because I would've never have known. Mm-hmm. So now, 'cause 'cause you got did some things through the waivers, do, are you the one that's got the fence repaired? You got a fence? Yep. Yep. So we, they paid for a wooden privacy fence because Hunter was a runner, he was an eloper. He actually did elope out of our yard. Even while we were having our fence put up, because it wasn't finished yet. That wasn't their full, but it, it's just, one of those things. But, um, yeah, they paid to put up our fence. Um, they pay for safety, things like that. They can, it can pay for medical needs and necessities that your medical won't pay for, as long as it's covered. of course. But we got a wagon. one of those, big wagons for the girls when they were younger because they were also elopers, and trying to take those two to therapy together was a little bit of a nightmare. And so they, they helped with a lot of those things and it was so nice, so nice. And I, I just don't think that a lot of people know that those services are there. Yeah. This is great. This is so informational and I think it's really gonna help a lot of people. Yeah. I hope so. Yeah, that's great. And we're glad that they're these, like all the kids. Well, the ones that are still school age, they're enjoying their school experience and you're absolutely, like, you have some good, good plugins through there. And so yeah. Kinda plug in away. Yeah. Yeah. it's been good. Hunter's homeschooled now. But, oh, that's you? He's, yeah. Yeah, it's me. we're not doing, we're not following a curriculum, but, um, because he's in junior high, right? Yeah. yeah. Yeah. So eighth grade. But, we're doing totally that I know, but we're doing things that like. Teaching 'em how to load the dishwasher, teaching them how to do the laundry. Mm-hmm. I take 'em grocery shopping with me every time I gotta to go to the grocery store. those types of things. And then we're hoping to do some kind of home bound program through ISD 7 0 9, because they don't like to do those programs until kids are in high school. So that's kind of why we're taking this year to I figure stuff out. You're laying the groundwork, but you're also doing, yeah. You're also probably letting him follow his interests and you're like, oh, read a book about that, or, that's what we've been doing. hunter doesn't, comprehend a lot what he learns to apply it to work, so we know that. So, and the schools were doing a lot of his work for him, he's, he learns, but just in a completely different way. So. It's, it's hard. I'm not a teacher. I'm not a teacher, so we're just, I'm just doing what I can and he's a lot happier. He was going through a lot of bullying and he was dealing with a lot of issues at school. yeah, a lot of things that, made my decision to have to pull him. It was not an easy decision. and it was something that we would, we were dealing with from last school year. Snowballing into the school year. so yeah. So that's a newer development then. Yeah. So there was something that happened at the end of the last school year, and you're like, that was really bad. And then they changed a bunch of protocols and we felt safe to send him at that time. but then at this, this next school year, something that happened that I just, I pulled him on. I just never let him go back. And you know, it is just one of those things, when you have a child with special needs, you have to make that decision and that call, and I was in the position to make that decision and call. And not everybody is, and it's unfortunate when we have children that are vulnerable and you have other children that are vulnerable that go to the same school and they get unsupervised and things can happen. and It's just one of those things. So we're, he's safe and that's all that matters to me. 'cause Hunter still has, even though he does have his voice, he's a really hard time understanding right and wrong. And, so yeah, we're still working on it. Yeah. Well, I'm glad that, as you're covering yourself and the girls and everything else that, that you're finding ways to make impacts. Yeah, to make an impact for your children and to reach out to others and hopefully as you said, hunter will get more access to different things as you are searching that out. 'cause there definitely is that difference of what's available when the kids are really young and there's all these things and then people know, and then they're piggybacking off each other and then you're like, oh, we're at the next level, which is a middle school age, like at 1112. And you're like, oh, now I gotta figure out and learn all those new. New access, accessible things and where are those people and all that. And then, and like you said, now that you have another two children that are in cusp of adulthood and adults, um, they're also navigating those different worlds too, about what's accessible and how do they advocate for themselves now because. Yes, you can still support them, but it's different when they are the ones that are supposed to be in the driver's seat and, and they're not because mom still does everything. Oh, oh yes. We are, we are the same boat where we have some kids that are just, just over the border of 18. And you're like, yep. You, I mean, you're 18, but you're, I guess you're not an adult, but you're legally an adult, but you're not really an adult yet. You're still developing. Mm-hmm. Still having to figure out how to do all these things. Mm-hmm. Definitely. I agree. And the neurodivergence, that's, that's some extra steps. Yes, yes. Some extra supports needed, and that's okay. Yeah, absolutely. I have no problem with that whatsoever. Yeah. So, well, thank you for coming and sharing your story. We, yeah, thanks for having me. Said when we were, when I was thinking about. Through the eras of my anyway, I'm like, wow, you really have experienced a lot of, of what this clinic has to offer. And it was so cool. Like you said, we were in a garage. Yeah, pretty much. Hunter's. Hunter's first therapy was a converted garage. It was very cool. I mean it had like that cool, it had like bean bags and stuff like that, but it was originally a garage from, Gas station that was then converted into a bank that was converted into a clinic. So we, we, you know, we used what we had. Yeah. And then you got to experience this, this clinic, you know, in 2016 it was built and, and you came in and you're like, whoa. Oh yes it was, I mean, just because there's all this light and all these windows mm-hmm. And all this space, and so we. We made it work whichever situation we had, and it was still that same good quality therapy, but it's just fun to see how it all went through. Oh, yeah. Yeah, absolutely. It's been great. All right. Thank you so much. Yeah, thank you. 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.