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Transcription: Support for Parents of Autistic children
Charlie McDermott 0:00
Welcome to the mosaic kids podcast with Jessica Rosen. Well, welcome back everyone, Charlie McDermott, co host producer of the show. But fortunately, the most important person is here. And that's Jessica Rose. And Jessica, how you doing?
Jessica Rosen 0:14
I'm doing great. Hi, Charlie. Hi, and
Charlie McDermott 0:15
welcome back. We took a little hiatus, you know, holidays and life and all that, but came back with a bang today. I see you have a guest who you have with you?
Jessica Rosen 0:27
Yeah, so I want to introduce my guest, Johanna Taylor. She is parent of a client who I worked with a long time ago, and maybe not that long ago. It's been probably about a year. But my buddy Jackson, and he's 10 years old, he is autistic. And Johanna has just had a remarkable journey as a parent, as an advocate, and she's doing some great work. So I wanted to bring her on the podcast to chat with her today. How are you doing? Johanna?
Johanna Taylor 0:59
Hi, I'm so happy to be here.
Jessica Rosen 1:03
The absolute most important question that I have for you, and it will be what we talked about through most of this podcast is what do you want people to know? What do you want your providers to know about Jackson and about your journey.
Johanna Taylor 1:18
So Jackson, you know, everything that I say obviously, this I can only speak to Jackson is a spectrum. And Jackson aligns more, I would seem more severe on the spectrum compared to a lot of kids. Academically, I guess, he doesn't really have a lot of like, really big behavioral concerns. Jackson is nonverbal. He communicates on a device, an AAC device. And that has really been amazing. And finding his voice with that. I think if I could summarize the number one thing that I would want people to know about someone like Jackson on the spectrum is connecting at their level is key to learning. I used to think that, you know, they need like any child like what great like social, a social setting can do for a child in a social environment. And I used to think that Jackson needed that. And I stopped him. And I realized, it's not so much about them, being social with peers, with someone like my son, it's just connecting is really when it's like I say, the sweet spot, when when someone connects with him and comes into his world. And they understand the why, of what, what why things are interesting to him, when they really get to his level is really where you are going to get the most out of him where he's really going to learn at his best. And a lot of people don't get that. And it's just because they don't understand they don't understand.
Jessica 3:02
What I hear a lot in the therapy world now, is about connection over compliance, and that the very first thing you need connection. And I think that's important. One thing I have learned was just if I had an agenda, that was my mistake.
Johanna Taylor 3:31
And then it's somehow like, it diverts you into another way. And they're like, you know, it's, but once you do
Jessica Rosen 3:38
that, that is connection piece. And that's the most important thing, especially from a communication standpoint.
Johanna Taylor 3:45
So another thing that I found out is that 90% of people with autism spectrum disorder has sensory processing difficulties, which was a really, I mean, it wasn't surprising, I knew it was going to be high. The majority of people that I meet do have sensory challenges. But with that being a statistic, the majority of public schools in the country don't consider that a real condition. Because they don't. It makes it difficult to get sensory friendly activities and teaching techniques integrated into the IEPs.
Jessica Rosen 4:24
Yeah, it'd be so challenging, especially when, as we're learning more and more now, it's so important for all your therapists and teachers to understand Jackson's specific sensory profile, what are his needs? What is he unresponsive to what is he over responsive to? What will calm him when he's upset? And so much of that is learning about an individual's profile. And if we're not allowed to explore that, at school or during his daily routines, then we're missing a lot of learning opportunities.
Johanna Taylor 4:57
Yeah, because you know, I think we These children, you can't really focus, you have to like focus less on the social norms, right, because we, they people work so hard with like making them feel, quote unquote, normal or being able to do the things like everybody else at times. And, you know, a lot of times they like to sit on the floor, they like to have their shoes off, they like tight compression, they like stimming, which are not what you typically see in a person. And if you focus, if you focus on more, allowing them to have these things that make their body feel at best, you could get more success out of them, like if, you know, in school, for example, or, you know, they're supposed to sit at a desk for Long's amount of times, and they're not feeling at best. So you're probably not going to get the best academic response from them or get them to function like you want or participate. But if you come down to their level, and let them give their body what their body needs, and a lot of people don't understand that and giving them the, you know, the blanket or, you know, having letting their shoes off, or whatever it may be, it'd be Amazing that how what you can get from them. Like, it's just another aspect of coming into their world.
Jessica Rosen 6:26
I think it's so important. And so So I guess eye opening when you're working with these amazing children, that you have two things that you need to be able to have success, and you need them to have sensory regulation, so they feel regulated in their own bodies, which we all need. And we all do different things to do that, like I might, you know, tap my pen or whatever it is that I do. And we need them to have access to communication. And if you have those two things, you're on a good path.
Johanna Taylor 7:00
Yeah. And it's funny because as a mom, when I meet people that like I say, Oh, my God, this person gets it. They get like, I'll take my son to a dentist office. And they're like, oh, yeah, he can walk around wherever he wants, or oh, he can do that. And I'm like, Oh, my God, I love it here. Like, they, they get my son. And when I meet people like that, it's just so refreshing and nothing against someone that doesn't obviously they just don't know. And I love the people that are don't understand and allow me to educate them and let them to understand and yeah, it's it's awesome when you meet those people that that have experience with it and get it. You know,
Jessica Rosen 7:40
I love that. Actually, I think that brings up a topic that's really important to you as well, which is access to communication, because you do have a son who's nonverbal. And that we all know, that does not mean he's got nothing to say. So I'd love to kind of hear your thoughts on that too.
Johanna Taylor 7:59
Just like his journey you're saying with, with the AAC device?
Jessica Rosen 8:04
A little bit about what that has looked like for you guys. Yeah.
Johanna Taylor 8:08
So I was pretty against the device. At first, I think
Jessica Rosen 8:14
real quick, just to let anyone know who's listening what an AAC device is?
Johanna Taylor 8:22
Yeah. So it's, it's basically, it's a device where you could communicate on there's buttons where you push your wants and needs. And it allows you to express like your voice, we call it his voice. So Jackson has
Jessica Rosen 8:36
its iPad app, he carries an iPad with him. And he has alternative and augmentative communication. And he's has essentially picture symbols that he uses to access the words that he needs when he needs them.
Johanna Taylor 8:52
Yeah. And that has been that's been that's changed our life. Not so much in but us as a family. I always say like we speak, we speak in his AAC device as a family, you know, but it's, it's been great. And with that, in my journey of learning it and I'm, I'm a lifelong learner, like I never say like I know at all like I'm continuing learning two weeks ago, I just took a three hour class learning more like, we'll always as a family continue to learn more about it, because this is growing with him. But I like I am an advocate of a C device and I and I want to continue to teach it and inspire other parents to learn more about it. And I love it. I think it's great. I think it's, you know, we all just want to voice and be able to express ourselves and a lot of these kids struggle with that. Even if they are vocal. They a lot of them still struggle with expressing their feelings or stuff like and this just allows for them to do that. It's it's, it's amazing. It's amazing. Yeah.
Jessica Rosen 10:04
It's amazing how many applications there are. Once you start learning more about AAC and the kids and the adults and the people who can benefit from it, it's a pretty, it's a pretty cool rabbit hole to go down, as I like to say,
Johanna Taylor 10:17
No, for sure.
Jessica Rosen 10:21
To learn more about and to really realize the wide range of, of people who can help.
Johanna Taylor 10:28
Yeah.
Jessica Rosen 10:30
Is there anything else you wanted to share with us?
Johanna Taylor 10:33
With Jackson in general, just, you know, I think, like, in my area here, where I live, we just started a support group. Last week was the first day and that was something that was needed in this area. And, you know, everyone has their own struggles and their own challenges, because again, every child is so different. And in my area, we just noticed that there was a need for a support group for us parents, and that has that was huge, we had like a really great turnout. And it was incredible, because we were at your space.
Jessica Rosen 11:05
Mosaic kids, and I have the kind of privilege of sitting in with you guys. And listening to what the parents had to say. And just learning from parents and their journeys is probably the most important thing, I think, as a provider, because our little four year olds do not stay four years old. And their journey with us is kind of a blip on the radar, compared to their journey with you. So it's such an important thing to learn, and just seeing the parents come in and being appreciative of the work that you're doing was really great.
Johanna Taylor 11:35
yeah, it was great. And it just made me like I knew that there was a need for it. But to hear other parents say it and just, you know, they're like, Okay, when's the next meeting? And it just, it's just, it was awesome. It was awesome. And like I said, we, we can do great things together as a community, like not one person can do it by themselves. Like, it's, it's worth it. It's better together. And I'm really excited to see all the great things we could do together as a community for these kids. So yeah, it was cool. It was really cool. I'm excited for what can come of that this group together. That's awesome.
Jessica Rosen 12:10
Yeah. Is there anything else you feel like, in this community in particular that you wish you had, or wish you had access to? I guess, you've kind of had a lot of different experiences. So I always wonder about that we'll be doing
Johanna Taylor12:28
I mean, I am, I'm very involved with my school district, I think every parent should definitely get involved with their child's IEP s and find out a lot of times, I always say it's written in lawyer talk. And it is very difficult, and a lot of parents get very overwhelmed and IEPs. But this is something that's great. Like as this, you know, not going back to the support group. But this is where we could help each other share, like, you know, to understand the the procedure is a little bit better with the IEP meetings. But something that I that I worry about, that keeps me up at night as a mom is not so much what is not in my community now serving Jackson now for his age at 10 years old. But I always worry about the future. As a parent. We are not set up for what happens with kids on the spectrum when they become an adult when they they get out of the system. Like we're not set up like that for things in place for them. And that's really concerning. So it's something another, you know, another thing that I would love to work on a dream of mine is to get that in motion.
Jessica Rosen 13:43
I think there's a huge need for that in this area. And I was actually surprised, but I thought it was great that a lot of or at least a few of the parents who showed up were parents of adults.
Johanna Taylor 13:53
Yes. Which I love. And I don't have a lot of.
Jessica Rosen 13:57
for the parents of kids who are newly diagnosed or you know, are in elementary school, middle school, whatever it may be, wherever you are on that journey to have the support of someone who's already been there.
Johanna Taylor 14:09
Yes, yeah, I I love that. Because like I said, my son's 10 years old and I don't know a lot about what happens as he becomes a teenager and a man and you know, this is so I love that. It's, you know, this is a group for everyone. And yeah, it to get those perspectives was really great. But yeah, it's something that I know, every mother, every parent that I talked to they all it's their fear, it's just this fear what happens. That's, that would be my number one thing that's missing, but I know it's not so much about this area. It's missing everywhere. To be honest.
Jessica Rosen 14:48
I think we spend a lot of time in pediatrics, thinking about developmental disability. And that's why I said earlier that's why I always try I remember that my four year old is going to be 14 and 24 and 34. Yeah. And that you can't just say, Oh, I work with the little ones, they're so cute and so much fun. Because there, there is a goal at the end of all that, and that's adulthood. That's why I'm so like, you know, independence or some level of independence or access to the assistance that they will need to live the best life possible.
Johanna Taylor 15:25
That's why I advocate so much for life skills. You know, I think at times, we tend to, like, Oh, it's so important that they learn their ABCs and one, two threes, and, you know, all the academic stuff where they don't even have life skills, and we need to focus on that, because that's what's really, that's that that's what they need. And I'm saying that more for people that are more on this, the severe spectrum, obviously, when I say that, but yeah, planning for the futures is tough, you know, and we're parents, like, I don't know what I'm doing. I'm just doing what I, you know, like, when we all don't know what we're doing. And we're just,
Jessica Rosen 16:05
we all just throw the spaghetti at the wall, and we have to see what sticks.
Johanna Taylor 16:09
Yeah, it's interesting, but I've surrounded myself, like, I just love surrounding myself with great professionals like you and, and, you know, I have, like mentors in the community that that has just really helped me a lot. And if you're lucky enough to find people like that, that you could, you know, help you through it that makes a world of a difference.
Charlie McDermott 16:38
Join the support group, which sounds like a phenomenal thing. I can't even imagine being in your shoes and other parents. For listeners who maybe want to learn more about that. And is it open to everyone in southwest Florida, or, you know, is should we direct them to a certain place or?
Johanna Taylor 16:58
Yeah, so it's, um, it's located in Naples. But it's, it's very close to Benz which was, is great, because even people from Lee County, it's not that far for them to congregate. Patient is great, but it is located in Naples. It's Jessica's business. It's at Mosaic kids in Naples, Florida. And we do it the last Tuesday of every month at 6pm. And, yeah, and maybe eventually. We haven't had a lot of parents ask for it. But maybe eventually, this is something that will have like a virtual option for parents that maybe can't make it. It's still new, we just had one meeting. So maybe that's something eventually, but as of right now, it is at Mosaic kids in Naples, the last Tuesday of every month.
Charlie McDermott 17:47
And Jessica, I know you you could probably share the contact information, could you not?
Jessica Rosen 17:56
actually, I'm going to get some more information up on our website. It's mosaic- kids.com. Or you could do at Mosaic kids FL on Facebook, and we'll post fliers with the information so that anyone can check that out.
Charlie McDermott 18:16
Wow. That's terrific. Well, boy, it sounds like a group I I'm going to share this information with a couple of families that I know of in the South. Yeah, yeah.
Jessica Rosen 18:31
Yeah. Great. reach as many people as we can. So that would be awesome.
Charlie McDermott 18:36
Super. Well, Joanna, I really appreciate your time and sharing your insight. And, Jessica, anything else you want to share anything new at Mosaic kids that we should know, besides a support group?
Jessica Rosen 18:48
Oh, my goodness, what's new at Mosaic kids. We are always working on programming and figuring out what the needs of our community are and trying to go ahead and provide that in any way that we can. So we're posting on our website posting on Facebook updates, and I'm always open to suggestions. If there's something you wish was in this community that isn't yet. I would love an email, mosaic kids naples@gmail.com. Just give me your ideas, because I love being able to make them happen. So,
Charlie McDermott 19:26
so nice that we have you and folks like Joanna and your team, your specialist in this community. It's that's not the case in many places throughout the country. So we are we are blessed to really appreciate learning. Joanna and Jessica is always a pleasure. And we'll see you in the next episode real soon.
Jessica Rosen 19:46
Thank you. Great.
Charlie McDermott 19:48
Thank you for listening to the mosaic kids podcast. To learn more about mosaic kids gem therapy suites go to www.mosaictherapyFL.com, www.mosaic-kids.com or call 239-249-5292