Episode 284: Ashley Waterman: Supporting Language as a Parent of an AAC User
This week, we share Rachel’s interview with one of her clients, Ashley Waterman! Ashley is the parent of three boys, including her youngest, Liam, an AAC user who has a rare genetic disorder, Cohen syndrome. Ashley is passionate about connecting families with children with special needs to essential resources, and is a board member of the Cohen Syndrome Association. Ashley shares about the struggle to get Liam diagnosed, Liam’s amazing progress using AAC, ways they have incorporated modeling into the home routine, and more!
Before the interview, Rachel and Chris connect with Rachel's Office & Digital Media Manager, Monica Halschishick! Rachel and Monica discuss how they found each other, how Monica grew into her current position, and some tips and tricks for improving your digital marketing!
Key ideas this week:
🔑 There are times where Liam requests things he can’t have, and Ashley makes sure to communicate to Liam that what he wants isn’t available. We can’t always give a child what they want, but it goes a long way for us to hear them and acknowledge what they are saying, even if the answer is “no”.
🔑 Liam likes to explore his devices sometimes, like pushing “g” and “o” because he likes circles. Sometimes people will say that an AAC user is “stimming” when a child explores a device and will try and stop it, but allowing AAC users to explore their device honors their communication and supports the visual lexicon.
🔑 Asking permission before we take a device away from an AAC user is really important, even when modeling. While it isn’t always possible to do, having a second device for modeling in the home for the family gives the AAC user more personal autonomy over their AAC device.
🔑 Many children have anxiety in some speaking situations - for kids with disabilities, a lack of communication may be misunderstood as a lack of ability, when in fact they are just nervous.
Transcript of the Episode
Please Note: This transcript was generated using speech recognition & AI tools; it may contain some grammatical and/or spelling errors.
00:00:08
Welcome to Talking With Tech. My name is Chris Bugaj. And today I'm here with Rachel Madel. Almost as always with Rachel Madel. But not just Rachel Madel. Rachel, who'd you bring with us today?
00:00:17
I have my teammate Monica here, Chris, and I'm so excited.
00:00:21
Hi Monica. It's so nice to meet you, although I guess we've met once before. I think just very briefly on a Zoom. Well, welcome. Thank you for being here.
00:00:31
So I have to share, Chris. So Monica is kind of behind the scenes of my online business. So like Monica does like all the reels you guys see and the resources that we sell and the emails we send out. Monica is the one who kind of organizes that and leads our digital team. So I'm really excited that she's on the podcast because we're actually in person together, which doesn't always happen. But yeah, I'm really excited because we've been working all week on. Stuff for the year for my course AEC Ally, and just kind of getting ourselves organized and having a work retreat, if you will.
00:01:06
Awesome. Awesome. All right. Monica, I got some questions for are you ready?
00:01:09
Ready as I'll ever be.
00:01:11
So, Monica, do you do speech as well, or is it sort of the digital marking marketing thing, or is it “I'm speech with digital marketing as sort of my side hustle?” Well, how does it all work? Yeah, I guess.
00:01:24
I don't know. I'm still figuring it out. I'm in school right now. I'll finish grad school in December, and then I'll be with Rachel doing CFY. But Rachel got me into speech.
I know I was going to say, Monica, we have to tell our love story. Let's talk about how this this beautiful relationship came to be. I was so serendipitous. I was babysitting. I had moved out to LA and I'd been here for about a year and was babysitting. A kid that Rachel was seeing and she'd come into the house and kind of show like, come, come sit in my session, like see what we're doing. I'm like, oh, great, OK, cool. And I think I was studying like early childhood development at that time and doing like preschool things and saw Rachel come in and thought, wow, that looks. Way more fun for me. I was recruiting hard. I was like Monica, like, you need to be a speech language pathologist. Like, let's talk about how great this field is. And of course, I was looping Monica in because she was a primary caregiver of one of my students. And so I'm thinking, like, OK, like you can do all these things when I'm not here. Like, you can be my my, my girl on the ground. And so of course, I was teaching her all about the things that she can do and the strategies that she can use and. Definitely hard selling her on going to Graduate School for Speech Language pathology. And it worked, yeah. It seemed to work, yeah.
00:02:48
Yeah, so from there I just stuck with Rachel. I'm like sticking like glue over here and she brought me into the back end stuff.
00:03:00
So really you've been with Rachel your whole academic career. I mean, as soon as you switched over, like you started studying speech and you've been with Rachel ever since.
00:03:08
Ever since happily ever after.
00:03:11
Well, she also said you have a background in design. So that's important.
She's really good with design. It doesn't even matter if you have a background in it. She's really good with design. So once I realized, Oh my gosh, she's so good on canva, she's so good. Her eye for design is so good. I started figuring out, like all the things that she could start helping me with. And yeah, it just her, her role grew bigger and bigger.
00:03:34
Well, Monica, that's I'm curious about both of those things. So what got you interested in early childhood education? Because it seems like that's what you were doing when Rachel sort of discovered you. And then on the flip side of that coin, let's flip it over and look at the other side and say and ask, how did you get interested in design? Is that something you've, you know, since I was a little kid I've been drawing pictures and designing things or like, no, when it got digital, I fell into it. What's your story?
00:04:01
Yeah, well, it's been a really winding journey. Design, I mean, yeah, like you said, pretty much drawing since I was a kid. Really got into deep in high school, decided I'm going to go to school for graphic design. Did that for a semester and I was like. Maybe I can just do this on my own. Moved to LA to try to do like freelance work. Did a couple of gigs, was like, well, that's not a lot of money, yeah, so let's babysit and started working with more kids and really found love with working with kids and and being around them. And yeah, I think that's what led me to early childhood. And then? Seeing Rachel, Let me hear.
00:04:51
Awesome. Well, you've mentioned now twice that you moved out to LA. Where are you from originally?
00:04:56
From Phoenix, AZ.
00:04:58
Ah, OK, that's one of our favorite places.
00:05:00
Big AAC hub in Phoenix, right? Chris, like so many AAC Peeps are up in Phoenix.
00:05:06
It's why it's one of our favorite places we've had. We've had the opportunity to go there and present.
00:05:11
Yeah, it's great. Other than in the summer when it's too hot to do anything, Monica was telling me. Like, Oh yeah, this time in Arizona, it's like 90 degrees at night, at like 2 in the morning, I'm like, sounds terrible.
00:05:25
I think a bunch of people that listen to this podcast are also interested in social media marketing and how to convey a message to A to a large group of people through social media. And when I say people listening, I really mean me. I'm interested in what advice do you have? What are some tips, tricks, things to do, things to stay away from.
00:05:44
Oh my gosh. That is a question I ask myself all the time. Like what? What do we do? We're constantly researching that, Chris. It's I think we find just trial and error and trying a lot of different methods to see what resonates. And then also, we were talking about how proud we are to be putting out content that really helps people. Like it's not just fun little clips, it's really a hub, a resource hub that you can use. So I think that in itself adds a lot of intrinsic value.
00:06:19
Well, Monica, can I just say, I've been at this game for a while now and I find that that is so true that there I think a lot of people sometimes start with how can I use this as a marketing tool as opposed to how can I use this for a tool for good And then the marketing will just take care of itself, you know?
00:06:37
I mean, I feel like Chris, our podcast is an example of that. Like, have we ever marketed our podcast?
00:06:43
Not really, no. We talk about it when we do speaking events, but otherwise it's just kind of been this, this grassroots effort that's really blossomed.
00:06:50
And I think it's a testament to when you provide really valuable content that people will come, yeah, just do good, try and do good things and it'll come. But still, Monica, I know that there's some effort that that goes into it meetings that you to have or more maybe Rachel, your whole team, I'm not 100% sure. But there's some design elements like there's branding that you have, there's a certain style to the videos. You know Rachel's not out there doing dances on TikTok, right? Like, so how do you, how do you make those decisions?
00:07:23
Should I? I want to share really quickly because it's going to be funny to share this inside detail when reels started going crazy on Instagram. Like, we all kind of remember when everyone started like you said, Chris, like dancing on TikTok. My whole team was like, oh, I think Rachel, we should do Reels. I'm like, no, I was like, I will not. I refuse. I put my foot down like I will not dance on TikTok. I not wanna will not dance on a real and my team really started kind of brainstorming, well, maybe we can do things different, maybe we can, you know, still provide good content. It's just videos, right? And so I feel like Monica is partially responsible for kind of getting me out of my comfort zone with the real game because, I mean, things have completely transitioned to reels and you know, without pivoting and changing kind of what we were doing, we would kind of be left in the dust, so. I just want to share that because it's funny you mentioned dancing on Reels.
00:08:19
Well, it seems to be in in the larger scheme of AAC. We talk about the intervention and the strategies and we talk about the tools. Well, Reels is a tool and you're like, well, OK, how are we going to use it? Other people are using it by dancing on it, and that's not our thing. That's not my thing. What is my thing? And you had to have discussions about what is your thing and how you're going to use it. But the tools, The tool, right? Monica, what other tools? So we know Instagram and reels on Instagram. I know Rachel has sort of hinted at how AI has changed things. What other tools would you say, use this, use that, You know, stay away from this. We didn't have good luck with that. What's some advice do you have?
00:08:58
Yeah, all of the AI just utilize it on everything that you can. I mean, Rachel's constantly sending me things that are like, wow, I never knew you could use it this way. I'm like, wow, neither did I. So like, yeah, ChatGPT, like help us write comments, like all kinds of stuff. It really just helps you kind of start formulating, give you a jumping off point.
Canva has been the biggest blessing, we do everything on Canva, like I use it in therapy all the way to like, all of our resources are made on Canva. Like we are constantly using Canva and I feel like my team is very well versed in all the different features and functions of Canva.
00:09:40
Yeah, for sure.
00:09:42
It makes everything so, so easy. Like when I was going to school for graphic design, it was, you know, you have to do all this in Photoshop and you have to create all these things. And I was like, Oh yeah, let me just. Grab this thing from Canva. Put this here. It just, it makes it a breeze.
00:09:56
Yeah, I know. It has a feature where you can bring in an image and it will pull the colors from that image and then create a brand around it. So now you know. OK, this is my, my Swatch. What is it? What's it called? Monica. Swatch of color? Yeah, a.
00:10:11
Swatch.
00:10:11
Yeah, color palette. Yeah, your color palette. It has your color palette. It knows what the what the right numbers are for each color. Cool. So you guys are working together here, like in person together, 'cause a lot you do virtually. Is that fair?
00:10:26
Yeah, I mean, Monica lives in a different part of the city. And also my whole team is kind of remote at this point. Like, I don't typically see them in person a lot, but. When we're doing these kind of week long retrieks, we want to be together and it's just so much easier to like just be in the same place and working kind of next to each other and bouncing ideas off of each other and I feel like there's kind of an energy to. That momentum that we can build and Monica and I were just talking last night about how it's really nice to kind of focus very specifically on a project instead of kind of this piece meal like Okay, do an hour here and then two days later do another 30 minutes. And like it's just like we do better when we kind of deep dive into a specific thing. And so yeah, we're we're organizing our My Course a ACLA is going to open in October. So we're doing all the e-mail marketing and social media things and all the. All of that organization and just kind of planning out the rest of the year too and what we're doing social, media wise, what we want to do, the collaborations we want to have with other people, you know on that platform. So it's been really fun to kind of have that energy and like a very streamlined focus instead of just everything being piece meal.
00:11:40
Yeah, you can get into Flow.
00:11:41
Yeah, and it's nice to to have. Really focused time where we're really into our projects and then we have downtime. We're like all right now it's lunchtime. Now let's let's relax for a little bit and I'm able to ask Rachel all of these questions to just pop into my head like Rachel will say something like, Oh yeah, so why do you do that? Like when when would you start this? So it never stops. There's a lot of like clinical kind of discussions too around some of the concepts that we share on social media and and and the rationale behind it like the why behind what we're doing. Doing and what I'm saying and yeah, I think that's like one of the benefits too, is like really being able to teach and mentor about AAC.
00:12:25
Awesome, awesome. Monica, one last question. Tell us a fun Rachel story. What's the behind the scenes story that you can share about Rachel?
00:12:37
Ooh, some behind the scenes what she really like.
00:12:43
And if you need Rachel to leave the room, I mean, no one will hear the.
00:12:47
Kick me out. Yeah, let's get real for a second. Wow. Great question. One of the great memories last time we did a retreat. Was sitting out on the patio after a long day of like, really brainstorming and really like working hard on a resource. We're like, Oh my God, it's I'm so tired. So we sat out on the patio, brought a screen out and started watching some like reality TV. Really trashy TV. Think that you know when your brain is just dead in here, you just want to let you just want to not think about anything more. Like, yes, give me some trashy reality TV. It's so good. The best part of that story that Monica forgot was. That we got pizza delivered directly to my patio. So I was like, okay, I'm hungry, but I'm literally not leaving this couch.
00:13:36
That's awesome. How fun is that? That's great. Well, Monica, I know you're in good hands for your CFY and I hope you guys continue to stay in the flow of things while working and get a lot done. And thank you for taking your time and being on the podcast.
00:13:50
Thank you so much for having me on you guys. This has been really cool. Monica's a super fan of our podcast, so I'm sure yes, she's very excited about this. It'd be crazy to listen to my voice on two time speed a girl after my own heart.
00:14:05
Rachel, tell us who the interview is today.
00:14:07
I had the pleasure of interviewing one of my clients, Chris. Her name is Ashley Waterman. She has been in my practice for the last two years and I just love talking, you know, at a deep level with parents who are, you know, kind of working with their children, learning how to model, learning all the strategies, their whole journey of AAC. And so I was really excited to have Ashley come on. She does a lot of work. Her son has Cohen syndrome and she does a lot of work in that community and she's been an All Star mom. She honestly is always kind of learning growing. We're doing coaching together and. Her son Liam is just really thriving. He has he we started really young with a AAC with him before anyone else kind of thought that it it could work. I was like, yes, please, let's start this. And he's really just doing amazing. He's making so much progress. He's putting words together. He is so communicative and I'm really excited to share this interview.
00:15:10
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00:15:46
Welcome to Talking With Tech. I'm your host, Rachel Madel, joined today by Ashley Waterman. Ashley, I'm so excited to have you here today.
00:15:52
Thank you so much. I'm so excited to be here.
00:15:55
So just start off by telling your listeners a little bit about yourself and then I'm excited to dive in. So Ashley is a family that we work with in Los Angeles and we work with her son Liam. So I'm super excited to to share all your whole journey and to talk about Liam, but just tell our listeners a little bit about yourself.
00:16:12
Great. I'm Ashley. I live here in Los Angeles. I have three sons, Ethan, Noah and Liam. I have a wonderful husband, Ben and a large extended family. Liam is the youngest of our three kids and he is affected by a rare genetic syndrome called Cohen Syndrome. So I can chat a lot more about what Cohen syndrome is and what it means for Liam and how him having this genetic condition led us to AAC as a form of communication.
00:16:43
Yeah, I'm really excited because Liam is the cutest and has done amazing with a AAC and you know, we started at a really young age with him and I'm excited to talk all about that. So first, let's kind of dive into Cohen syndrome. Tell us a little bit about that journey for you and how, you know, you let got got down the path to a diagnosis for Liam.
00:17:06
Absolutely. So it's really wild. It's, you know, fascinating and heartbreaking at the same time. Husband and I did genetic screening 12 years ago before we had children and at the time we were a match for other conditions but we had never heard of cone syndrome. So I had a typical pregnancy with Liam and they did tell me that he was measuring small. So around, you know, 30 weeks we did some stress testing and they said that, you know, he was growing at his own curve, so not to worry. And when he was born, he was born at 40 weeks full term and he weighed £5 and and other boys they were also born full term weighed 8 1/2 pounds at birth so that was surprising for us and in addition my older boys had like 99 percentile on head circumference. It's one of those measurements they take when you have a baby. And Liam had microcephaly, which is like a very small head, like not even on the growth chart. He also had a really weak cry. It sounded like a bird. And then right away he had a lot of challenges with feeding, whether it was nursing or from a bottle, trouble gaining weight. He had a lot of infections in his first, even few months of life. He got strep at two months, which is really rare for a young child. He had a dermide cyst on his uvula that had to get surgically removed. He had, you know, eye infections. It was just, it was really challenging. And so a lot of things about me were different. So very early on we switched from our regular pediatrician to a lot of specialists at UCLA. My husband is actually a physician at UCLA. And I share this because when you hear about our journey and you hear how challenging it was to ask to access. So when you hear about our journey and you hear how challenging it was for us to access genetic testing and a diagnosis, you have to remember that my husband, a physician on staff at UCLAI, have a master's in health education and health promotion and disease prevention. You know, we're very medically literate. We know how to advocate and we still found ourselves like totally in the dark. So Liam started seeing, you know, gastroenterologist to increase his weight gain. And then a geneticist, the first in a neurologist, the first Test we did was called a microarray. And the first Test and that didn't send any abnormalities and then we were seeing neurology as well. We also by a few months noticed that his muscle tone was really weak. He couldn't hold up his head unassisted. So even before we had a genetic diagnosis, around four or five months, we started doing physical therapy and occupational therapy and we got connected with the state's, you know, early intervention resources and we went from there. We also around nine months his pediatrician noticed some early signs of autism. She noticed some stemming movements and also, you know, just some repetitive behaviors and she actually referred me to an incredible.
00:20:14
She preferred an incredible program called Jasper at UCLA. It was for joint assimilation, symbolic play, engagement, regulation, and it was the study. So I was assigned to the parent group, which was actually really incredible for me to learn about it because autism is so much more than I previously understood. So anyways, back to the genetic testing. After the microarray didn't show anything, we wanted to pursue whole exome sequencing. So whole exome sequencing is when they sequenced all 23,000 of my genes, my husband's genes and Liam's and they if they find any mutations and really just any mistakes along the way and then even if they find something they have to see if it has any clinical significance. So Liam was 13 months we received this formal diagnosis of Cohen syndrome. This meant that he had a mutation on the V PS13B gene. And I share that we did. We had previously done genetic screening because this is actually an autosomal recessive condition, which means husband and I are both carriers. And with each pregnancy there's a 25% chance of that child being affected. So it didn't happen to our first pregnancy. It didn't happen with our second. And then it happened with Liam. And there have been advances in genetic screening. And I know this because when we received his diagnosis, I had resistor in laws that were pregnant at the time and they were, you know, understandably concerned. So they went and did genetic screening at our O B's office. You know, $250 Cohen syndrome was on it. And I found out they weren't barriers. But it really also led me to talk to doctors about the importance of doing genetic screening for each, you know, subsequent pregnancy because there's just so many advances all the time. But anyways, so then we got diagnosed it. And you know, I remember the first thing I was asking was, will he walk? Will he talk? And they said, yeah, he'll probably walk. Later on he he might talk. We're not sure. And you know, as time went on, we started to understand what Cohen syndrome meant. And so I like to break it down into what it means developmentally and then what it means medically. So developmentally children with Cohen syndrome all have you know, degree of intellectual disability, global developmental delay, but they don't necessarily, you know, catch up. So they also have hypotonia, weak muscle tone which makes you know, motor, you know, communication a lot of things, a lot more challenging. And I think that you know from what I've learned because I immediately connected with a Facebook group of families is that the the children seem to stay very young for a long time. So like 30-40 year olds that you know, love Big Bird and celebrated his birthday yesterday because he turned 6 forever 6 big.
00:23:06
But you know the kids are that definitely, you know, stay very young. And so in terms of developmentally, many of them do have autism and so they're either diagnosed with autism or autistic like traits. So Liam did receive an autism diagnosis and I'm really happy that he received that because I think it really opens up the door from our services and he's done really well with a BA, with the five behavioral analysis with a BA therapy. So and then medically it means that Liam has neutropenia which are low neutrophils which are type of white blood cells that fight infection. So oftentimes a cold can land him in the hospital. And you know, just November was the most recent hospitalization. His brothers got a cold and in Liam's body, these viruses turned bacterial and he went into, you know, acute respiratory failure and needed oxygen. And you know, we're just so grateful again that we live in Los Angeles that we have incredible care that's close, that's comprehensive. So we're able to, you know, treat his symptoms as soon as this happens. And then additionally, all kids with cone syndrome have retinal dystrophy, so that leads to blindness. So right now Liam can see really well. He has glasses. Hopefully we'll show some pictures or something.
00:24:30
He is literally the cutest. Yes, we have to show him because I just like, especially with the glasses, it just like it's just extra level cute.
00:24:38
Thank you. So people with cone syndrome have, you know, myopia, which is just near sightedness and it's pretty severe and progressive. And then also retina, it is pigmentosa which affects the light receptors in the back of the eye. So a lot of the children become night blind at a younger age around you know 5 to 10, maybe legally blind between 10:00 to 20. But individuals with cone syndrome do live a relatively normal lifespan. And what I forgot to share, which is the most important thing, is that all of our children have a cheerful disposition. They are extremely happy, cheerful children. I remember when he was getting his autism diagnosis and I was doing all the parent education and there were so many forms asking me like how often I get frustrated with my child and I I genuinely don't get frustrated with Liam. Like he is the sweetest, kindest, most on it person I've ever met. Like he's just so joyful. He he just appreciates everything. He loves leaves. Magnolia leaves has been a favorite of his since he was a baby. He loves looking for the moon every day. He can't wait till it's dark to find the moon. He loves his milk, He loves watching Spidey and he loves looking for crows. You know he has all his distinct and shreds and he really you know, he doesn't care what anyone else thinks. Like Liam. Just like lives his best life every day, all the time.
00:26:03
Yes, he is honestly the sweetest and he has the sweetest disposition. Like he's always happy and engaged. And you know, when it comes to communication, which we can talk about in a second, having that, you know, intrinsic motivation to connect is not something we can teach and it's really exciting. You know that he is very inclined to communicate, and I think that's probably part of the reason why he's made such fast progress with a AAC and communication in general.
00:26:30
Yeah. And it's amazing because like I, I shared that when he was diagnosed. We said will he talk? And I remember one of my first posts on the Cohen syndrome family group was are your children verbal? And I never really thought about communication beyond words. So this has been an incredible journey for me because I'm learning about all the ways that people can really, effectively and meaningfully communicate without words. You know, I think that when I tell people that Liam uses his voice, we call it his voice. So the program he uses is called Touch Chat and we have, you know, a separate like. You can get into that if you want to ask questions.
00:27:09
Yeah. No, no, go ahead. Tell us about a system. Let's transition into AAC.
00:27:13
Yeah, so Liam. Liam picked up a few signs very early on. He puts his hand on his chest, which means I want and he kind of waves you away to say no. And he's able to sign more at a younger age. He has an amazing memory. He's really good at matching and has a great memory. And so I'm trying to remember the first time I ever heard about AAC Actually, I think we were at an early intervention program and someone told us about you, about Rachel Madel and Ian, about getting an evaluation. And so we started, we reached out to you and we were in contact with one of your awesome therapist. And so Liam was, because I just looked back this morning. So he was exactly 2 1/2 when we started the consult. And then, um, by age 3, he was having, you know, weekly AAC sessions. And now, thankfully, after fighting insurance a lot too, we get to see an incredible AAC specialist twice a week, which he loves. It's his great part of the day, like he just you know off and will be like Miss Alyssa, Miss Alyssa, like wait to see her and he loves to back the videos of the session so. I have to tell you, I love watching Alyssa's videos of sessions with him because he's so.
00:28:33
Happy and he's a little laugh just like gets me every time. So, and he's doing amazing, like he's actually so beautifully learning language through a AAC. You know, it's really exciting for me as a therapist to see. Your whole story, right? Because often times what happens is families don't know about a AAC or there's fears around a AAC. Like, you know, is this going to prevent verbal speech from developing? And for a 2 1/2 year old, you know, that's a lot of parents big fears. So can you talk a little bit about that? You know that whole process because I know that for every family and every person it's different. But did you have any concerns about a AAC?
00:29:15
Were you you know nervous about you know using technology Absolutely. So we, I remember going to his like 2 1/2 year old checkup and asking his pediatrician like what do you think about a C like you know really excited to hear what you had to say like will it hinder verbal speech will it help. And she thankfully we have an incredible developmental pediatrician who said you know any ways of communicating are incredible expose him to as much as you can. You know on our Facebook group even with families with Cohen syndrome the experiences were very different. But as it come to realize over the years, some of the kids become verbal at an early age still at two or three. Some you know, never become verbal and some become verbal at a later age at 8:00 or 9:00 or 10:00. So I was excited about us. You know, I I think I don't remember who the first person was that told me. I think it was Jasmine, our first, you know, a T therapist at work said to me, like, you know, I'm sure just like you have a favorite color. Liam had the favorite color. Like, we deserve to know what Liam's favorite color is. Liam deserves to share what his favorite color is. And it's true, there's so much that I didn't know about Liam because he didn't have a voice yet to share it. So I was very excited about the possibility. And so after the initial consult and the team decided that Touch Chat would be the best app for him, You know, there was a lot of modeling and he didn't pay to it immediately. And you know, Liam at the time was very small, He's grown a lot, but he weighed, you know, £25 and it's heavy to carry an iPad. And then it has to also, you know, have a case on it so that it's secure and it's really, you know, it's challenging. So I think a lot of the times we would like put it in front of him and he would start using it to request foods. It was a little bit like a menu during meals and loves grapes, Like grapes are his favorite thing in the entire world. So like eat grapes, eat grapes, eat grapes with like, you know, he would say that over and over and it was, you know, so he would start to express the foods that he wanted to eat. So at the beginning it was definitely more for requesting and we put it in front of him. And then something magical happened, maybe around like three, 3, 1/2 years where he started seeking out his voice and he was also getting strong enough to like pick it up from a counter, put it in front of him, smart enough to know to push the circle, to turn it on. You know, he really was looking for his voice and so it went from him, you know, just asking for specific foods to talking about activities. You know, he wanted to to go to the park or he wanted to play, you know, with a specific toy or he wanted to go on the swing. Or he'd have a snack and he'd tell us where he wants to eat the snack. And he would tell he wants to go eat it on the crash pad or he wants to go eat it outside or, you know, he wants to play with bubbles. So really a lot of us understanding what it was that he wanted. Sometimes, you know, Liam will just grab your hand and guide you somewhere. And then this point, and I know him so well a lot of the times I do know what he wants. And so I try not to, you know, make him ask for things in a million ways. But a lot of times I I do try to encourage him to use his voice so that others that don't know him as well can also like, really clearly understand, you know, what he wants. And it's, I mean, there's just so many advantages to it.
00:32:50
I, you know, we were at a restaurant a few months ago and, you know, Liam has such sweet, a sweet personality. And, you know, his meltdowns are like, very mild. But we sat down and he just started crying and he was really unhappy. And I took out his voice and, you know, he said eat chips because he remembered probably the last time we were at a restaurant, he ate chips. And I was like, Oh my God, that's what he wants to eat. And so we got him chips. And he was really happy. And it was like, imagine if I never knew that he wanted chips. And I just said, oh, it's okay or here's this, here's that and pulled out different foods or different toys. And he never got to tell me what he wanted. And he just continue that with that frustration. I can only imagine how over time, you know, a child could become so frustrated. And so it's amazing how even times when he's asking for something that's not available, he's so much happier once he's able to ask and we acknowledge that. So he loves to watch TV, he loves to watch YouTube, he loves to watch specific shows. So a lot of times he will ask to watch. Thank you for telling me you want to watch. But watch is not available now, or he wants a bottle of milk. And I'll say I understand that milk's not available. How about water? Or, you know, milk's not available? How about Cheerios? And so we're able to acknowledge his desires and then also give him alternatives. And so it's it's amazing because I don't even remember when my preoccupation with whether or not he'll become verbal just came to this like immense gratitude for his ability to communicate.
00:34:19
Yeah. And I think that often times it takes those moments where you're like, I would have never known, you know, in this situation what was really, you know, bothering him or I would have never known this small detail, right. It's like we can only anticipate so much. We can only. Do so much with nonverbal communication, right? Because that requires that thing to be accessible. And in that restaurant where he was upset about chips, like there weren't chips in front of him to point to or to take you to, right? And so it's just like there's there's only the idea in his head, and if he has no language, you know, consistently to be able to communicate those things. And he's just trapped and not being able to really connect.
00:35:04
Yeah, absolutely. And hold on. I was there was something else I wanted to share that I just lost my, my train of thought Also too, a lot of times when he's in the car, so, like, his voice goes with him everywhere, just like our voices go with us everywhere. And so when he's in the car, I can't look back to see if he's signing. So if he's kind of like grunting And I asked him a question, he'll answer yes and no on his device. And that's really helpful to hear it, like loud and clear. But there was also another car ride where he was pressing, watched by D watched by D watched by maybe went to the Discounts of Gardens. And it was a 45 minute car ride and he asked to watch the entire time. And I thought about taking the boys away because it was really annoying. But then I was like, no, I wouldn't take away a child's voice. So he can ask over and over and over and the answer is still going to be the same, but at least he's he's saying what he wants to. Yeah, exactly.
00:35:55
And often times, you know, you mentioned this idea of him talking about things that weren't available or you know. He couldn't have at that moment in time. Just validating and acknowledging, you know, a child's desires makes a huge difference. It doesn't mean we always have to honor it, because sometimes we can't, right? But just having that, that ability to share and have someone say, I hear you like I know what you're trying to tell me. Goes a long way. And I think that that is really powerful for kids because often times we we hear families that are like, oh like I can't always give them cookies. Like I want to take that off the device that I'm like or sometimes I want to take it off. I'm like, no, you if if a child is thinking something, they have to be able to to communicate it, right? And it's like a it's a motor planning thing. My brain thinks of the words that I want to say and then I have to be able to execute that, even if it means that it's not available or have to say. I have to hear like, no, like, we can't do that right now. And so I think that's a really important thing too.
00:36:56
I also wanted to say too that I think it's really improved his health. And I know that I've made this argument many times when I've advocated to our insurance company to cover the cost of these sessions is, you know, there are times where, like, I didn't know that he wanted water and he'll ask for water and I'll feel so bad because I'm like, of course I don't want him to be dehydrated. And I'm so glad that he asked for water, ask for sleep or hotel if he wants to go to his bed, you know, So it's, it's really nice. And then one day it was really sweet. My nanny took him to therapy and I said how was therapy? What did you do today? And he literally went into the sensory section and pushed crash pad and therapy ball. And then I confirmed with his therapist that that is, in fact, you know, what they worked on. And when you talk about, you know, asking for things that aren't available, like Liam loves leaves and he loves crows. And so like he couldn't sign crows, you know, different from Cardinal or leaves. And so he'll ask me often to go, you know look for crows or you know, watch crows, which is to watch a video of it. So that has been, that's been really, really exciting as well.
00:38:05
He is actually doing amazing language wise, like he is so fun to watch because he really does respond to the modeling of language and really starting to put these ideas together. Like he's now building sentences organically. And you know, it's just really exciting to see as a therapist because you know, these are the things that we know if we support kids by giving them immersive language exposure and that modeling on their AAC and we give them lots. Of opportunities to practice communicating with us. Then, you know, these are the things we start to see naturally happen. And it's really awesome to see all of the words he's starting to combine and put together.
00:38:47
Thank you. And yet also having his device, we now learn that Liam knows all of his letters, he knows all of his colors and he knows all of his shapes. And, you know, today. And then one thing I want to make sure I talk about is the importance of collaboration and how much I love that all the therapist that we've worked with, you know, through Rachel Maddow, I've always connected them with his PT, his OT, his A/B, A therapist. Actually his A/B, a therapist is with him 30 hours a week. So often times she'll, you know, fit in on the sessions or watch the section and it's amazing because then she can reinforce what they're working on all day long. Or like, he's in school now. So we had his, you know, private therapist connect with his school therapist. And just today when I take them up, he said, Oh my God, it was so fun. And like, you know, we were working on big and little or I'd ask him how many apples he wanted. And, you know, she's like sometimes he would just press the biggest number possible. So I'd say two or three. And he always knew three. And there you understand the concept that Liam knows I want the most possible. So it's really cute to see how much he understands. Yeah, His receptive language is is really, you know, phenomenal. And it's great that he has this opportunity. And then sometimes I'll find him on his device just exploring. And you know, he goes into the letters and he really likes circles. So he'll just start pushing, you know, BGUO all the letters with bubbles. He'll catch his, you know, favorite colors. Yeah, so it's it's been, it's been really fun and all for us too to like remind him some of our experiences.
00:40:17
I want to circle back to this exploration because I think what happens sometimes is we expect.
00:40:22
So like if we go to the zoo, we see a Flamingo. We can talk about it later and model for him, you know, where he can find it so that he can also share his.
00:40:38
Complete accuracy and perfection when it comes to AAC. And what I'm hearing from you is he has a lot of opportunities to explore his device and to hit all the different buttons and letters and all of those things. And that's part of the learning journey for kids. And often times we, you know, have people saying, oh, well, that's not functional or that's just stimming or that's not purposeful and it. It really is how many kids learn how to communicate. They learn where these words are and they like pushing the button and seeing the visual and hearing the word. And that is likely probably why he's been able to make the progress he's made because he's been given those opportunities. Instead of you guys saying like, no, no, no, like what? That's not the right letter and like kind of giving that corrective feedback. You guys have really encouraged him to explore and honored whatever it is that he's trying to communicate.
00:41:35
In the moment, the kids always think it's, you know, it's really fun and and sometimes that's a little bit of a trade off too because kids want to like take it and play with it. And I definitely want to share how Liam communicates, but I also want them to respect it as being his boy.
00:41:52
We've had a lot of AAC users on the podcast and interviewing them and that's one thing that they say is like don't touch my voice. It's like an extension of my body. And so asking permission before we kind of just like take a device. And even with modeling and I know a lot of families also a lot of my other families are saying like, oh, like it's an opportunity, right? Like we want that modeling and we want to encourage everyone in our house to speak a AAC, right. And so sometimes a second. Device can be helpful with the same, you know, the same program on it, just like that's the modeling device. And then we have like Liam has his device. So just just another idea that you know, I've shared with some other families is, you know, figuring out a system that works because for every student and every family it's very different. But yeah, it's it's definitely like something to navigate.
00:42:46
That's a great idea. Also, the other day I was really cute. Liam likes to come pick up his older brothers from school. He also really likes looking for buses. So we'll go pick them up. And if we get there early, we'll go on to Wilshire, you know, And there's lots of buses that come by around 3:00, and he'll look for buses. So the other day we went to the gate where we normally pick them up. We were a little early. We went to look for buses and we started to walk away. And he went into the device and you know when people and pushed Ethan Noah like to remind me like can I get my brothers from school. Like aren't we getting them from school. And right now we're working on personal questions so that if you like what's your name or where do you go to school or what's your mom's phone number. He can share a lot of that. But it's also a reminder too that if he's not responding it doesn't mean he doesn't know it. He also might be shy like Liam's not. I don't I shouldn't always expect him. Like I don't expect anyone else to always perform. And so the other day we were in a waiting room at, you know, one of his therapies, and there was a little girl there. And the mom said, oh, what's your name? And I took out his voice and he was very excited. But he was shy. And he started kind of doing some stimming and dancing around and moving in circles. And he didn't answer. And I knew he knew what she was asking of him. And of course, he knows how to say what his name is, but he was just being shy and playful.
00:44:02
I think that's such an important point because we know that all kids have those speaking anxieties, right? With new people and new situations. And you know, for kids who have verbal speech, we just, we we can look at that and say, oh, they're just shy right now. For kids who are using AAC or kids with disabilities, it it it Sometimes, like you said, can be misunderstood as lack of. You know, knowing or lack of attention or, you know, some type of lack, right? And I think that it's really important to acknowledge that all kids and individuals in general can have some shyness or some speaking anxieties and new situations.
00:44:45
And it's not that they don't know, it's that they just feel a little uncomfortable, of course. And I think sometimes I'm guilty of that too. Like, I'm so proud of him. I want to show off everything that he knows. But you know, if he's in a group with new people and he's not familiar with them, he's not comfortable with them. He also might not feel comfortable to share everything.
00:45:03
Yeah. And that's where you can kind of hop in and and do some modeling, right? Like you could tell them like your name's Liam, right? Giving that encouragement, you know? Can be helpful because if you think too, like when we're in a state of dysregulation or anxiety, you know, we're not able to kind of think about what we want to say and we're not able to always respond. And so having the ability to see someone model something could be another strategy that would be helpful in that situation, just so he can have some support in those moments, even though we know he can kind of do a lot of things. Independently, when we're just regulated, it's like our bodies aren't acting the same. And we sometimes need a little bit more scaffolded support to kind of do the things that otherwise we could do on our own.
00:45:50
Absolutely. And also sometimes if I can see he's frustrated and his voice wasn't near him and I bring it to him, I just see that sense of relief. And I'm like, of course he's relieved that he can say what he wants to.
00:46:00
Yeah, I know. That makes perfect sense. So what do you think? You kind of have been on this AAC journey for a few years and I'm so excited that I was able to guide you guys through that process and get you started with AAC and you know, support your family in that way. What would you say is one of the biggest challenges when it comes to AAC? And you know, there's a lot of, there's a lot of modeling that needs to happen and patience and all those things. But you know, from the parent perspective, what would you say is a challenge?
00:46:33
Honestly, I think one of the greatest challenges is just we know that we know our children so well and sometimes it's just a lot easier because you intuitively know what they want and they can drag you somewhere and you know, they can point. But I feel like sometimes we need to challenge our children. We need to challenge all our children. You know, whether they have, you know, developmental delays or, you know, they're nonverbal, we need to challenge all of them to to to to rise up. And I think that a lot of times, you know, it's easier to just get him what he wants without having him, you know, explain it or share, but then always reminded how valuable it is and how validating it is for him to, you know, use his voice.
00:47:22
Yeah, exactly. I think that it's easy to be super intuitive and know, right. Like I feel like parents know their kids so well that we sometimes miss those those learning opportunities to learn how to explain something or to be using more words to, you know, communicate something. I'm sure there's let plenty of opportunities where he's like I'll just use a single word right now and you know that it means I want to either watch that or see it or play with that. Toy, right. Like, we often times kind of make those leaps and sometimes I think that's Okay, right? Like, I think that it's hard. Using AAC for communication is hard and takes the energy and effort to build those sentences. So I think sometimes it's okay to just like say, oh, I think you want to watch right now, but while also knowing that there's so many opportunities where we need to model that next step above where where that communication is. And so I think that balancing is is important. And yeah, it's it's just like this extra, this extra layer of of, of commitment. Right. To like, teaching him the language that he need to move forward.
00:48:32
Absolutely. And I think that, you know, along with accuracy, you know, a lot of kids that are his age that are 4 might not be able to tell you exactly what's bothering them. So there have been times where he really just doesn't look well. And I'm like, Liam, what's wrong? Does anything hurt? And then I'll go to the page, you know, something's hurting. And I'll say, like, does your ear hurt? You know, does your throat hurt? Like, what hurts? Does your tummy hurt? And then there have been times, say, like here, here. And then he has an ear infection. And then I rush him to the doctor and he doesn't have an ear infection. But you know, that's okay too. Maybe his ear really did hurt and he doesn't have an ear infection. Or maybe he just wanted to press ear, just like someone would point to their ear. But he meant head.
00:49:14
Yeah, no. And that's one of the things that I know a lot of families come to me and say, like, I want to know what's going on inside of them. Because often times, you know, the kids that we're working with also have medical things going on and it's really hard when you don't know. How they feel what's hurting if they feel sick. And that's definitely like something to, you know, keep supporting that exploration because all kids take a while to understand like what's going on in my body. Even myself as an adult. I'm like, I'm not really sure like what's going on half the time. So it's I think it's an important thing to explore and to model that language and honor what he's communicating, because sometimes it's like. That can make a huge difference. And like, oh, like, his stomach's hurting. Like okay, I understand that. Like, maybe that'll change what we eat for dinner or, you know, what supplements or medications or whatever that we're, you know, going to try. And so that process I think is really important for for families and for kids to go through.
00:50:14
I'm really excited about going into more social and describing words. And you know, he's starting to tell us if things are good or bad, if things make him happy or sad. You know, I was thinking today maybe targeting silly because Liam's become like very playful. Like at school the other day his teacher said to me, I know he knows all his shapes. And when I asked him to put his shapes in the puzzle, he was putting them in the incorrect shape and then laughing hysterically. And so I'm like, OK, he's being silly. And so, you know, teaching him about, you know, just teaching him through his device.
00:50:43
Yeah, no, that's that's funny. I love when kids start using like a sense of humor, and there's tons of opportunities to practice more social language there because he's trying to connect in a funny way, right? And so humor is such a great motivator for communication, and a lot of my kids start doing things like that. And again, pairing that with language, right, so that he learns what that is. And is then able to communicate about it. I think that's awesome. That's so sweet.
00:51:13
Yeah. So there I went on, you know, and looked within our, by the way, I I didn't mention before, so Cohen syndrome is an extremely rare genetic condition and there's less than 1000 individuals diagnosed worldwide. And it's really, I mean, it's really been fun just sharing his journey with people and encouraging people. I mean, recently I just learned about a program in the state of California that was providing free iPads for anyone with a communication disorder. And I think it's expiring in June, but I actually stopped, just so you know, they are. They haven't done anything within two weeks. Wow. That's.
00:51:51
That is rough.
00:51:51
That is very rare and about half of those individuals are in the Amish community. So those are people I haven't connected with social media. There's also a higher prevalence and like Finland and Greece. And so we have this extremely international community, you know, friends that have become like family that are in, you know, Tunisia and Lebanon and Israel and all over the world. And that's another thing too. I think that through this journey, I've met so many incredible people and friends and I didn't feel so close to others that are going through something so similar. And I also think that it has provided me like an immense sense of gratitude. So, you know, if I'm telling someone, my child is nonverbal and has 30 hours of therapy a week and has some medical conditions and I need to get him two nightly injections, a lot of this sounds very sad. But then you meet Liam, and it's not sad at all. He's extremely happy. He's so joyful. And then I connect with families that have other genetic conditions. And maybe their child, you know, isn't able to walk or isn't able to, you know, eat food with their mouth and, you know, is G Tube fed or might have a condition that is degenerative. Like, there's just so many aspects of like Liam's life and Liam's ability that make me so grateful for everything that he can do, all the progress it can make, and then also to appreciate everything that I'm able to do and everything that my other children are able to do and just the ways that our bodies work to allow us to thrive. So it's been, I think, really cool. And I I remember the day that Liam was diagnosed. My husband said to me, Liam will be happy, we'll be better because of it, and our other boys will be better because of it. And even though there are times that are extremely challenging, that has all been true and that always will be. And, you know, sometimes it's okay to grieve the life you thought you would have or grieve the fact that, you know, you probably won't drive a car or go to college or get married or live independently. I mean, who knows? You may surprise us and do a lot of these things, but you know, it's okay to like, grieve and then also just be so appreciative.
00:54:09
Yeah, I think once you kind of. Grieve and have all those very natural, normal reactions to a diagnosis. You can come out of the other side of that with gratitude and hope and all of these kind of emotions that really keep propelling you forward. And I'm sure as you know. He has shown you all that he can do and is learning and you know is capable of it. Just again, feeds into that gratitude and hope and all of that, you know, positivity.
00:54:43
Absolutely. And every time I unhide a new word or open a new folder, like, I'm filled with hope. I'm filled with hope for his expanding interest and his expanding communication. I mean, he started looking for the moon every day. So then I went into space, and then I realized all the planets were there. And he had learned about the planets from a Bubble Guppies episode that he loves to watch. So we started talking about the planet. It started identifying the planet. So it's really fun to see how he can continue to, you know, pro within the program that he's using.
00:55:15
Yeah, I know. That's awesome. And it's really fun, you know, to be able to share new experiences and talk about new things and see what new curiosities he develops over time. OK. Ashley, how can people get in touch with you? You're very active in the Cohen syndrome community. And so I want to make sure people who are listening, who are interested in learning more about Cohen syndrome know where to go.
00:55:39
And also you have to share your social media for Liam because it's thing ever so our handle on Instagram, we're most active on Instagram. So our handle on Instagram is Cohen Syndrome. So CIO, sorry, we're most active on Instagram and our handle on Instagram is Cohen Syndrome, COHENSYNDROME. And then Liam has his own account called Liam Lights the Way because he really lights his own way and so on. Liam Lights the way is where I just show, you know, sweet everyday videos of Liam being himself, Liam being happy, Liam communicating with AAC the 1st and Liam told me I love you, which was all. I mean we'll go down in history as one of the most special moments of my life, so absolutely find out that Cohen syndrome Liam likes the way you can always message me. I love when I find new families that are newly diagnosed and I will pick up the phone happily anytime and talk to them and guide them through this journey. Because I'm so grateful for those that have done that for me and I just really love. I love connecting with people. So please find me. Reach out to me. I'm here to help you, even if it's another, you know, genetic condition or another communication disorder. Whatever it is, I'm very candid, very open love to share the resources that we've found and how we're able to obtain them.
00:56:58
Yeah, I think that sense of community is one of the hardest things when you're newly diagnosed, right? You're trying to figure out like how to navigate the space. And I'm sure that your experience was reaching out to communities that have some experience and have kids who have similar, you know, challenges can be helpful in guiding the way for you and connecting with the people that have been able to help you and. All of those things. And so it's awesome.
00:57:24
It's the whole new world.
00:57:26
Yeah, it's awesome how the Internet allows us to connect so easily with people, you know, like you said, all over the world.
00:57:32
Absolutely. I mean, I'm so grateful for all of the negatives and, you know, social media. I'm so grateful for all the people I've connected with, the people that make me feel left alone, just everything I've learned from other parents and other families.
00:57:49
Amazing. Well, Ashley, thank you so much for coming on today and sharing your your journey.
00:57:53
Thank you so much for having me. And just thank you again so much for doing what you do. It's so incredible. I mean, I definitely thought Liam was too young. He was 2. Is this something we should even explore? And I didn't necessarily see the progress right away. But once he started making progress, wow. I mean, his world is just expanding so much and we're so happy for him.
00:58:14
I know. I specifically specifically remember the first time we met. And I thought, you know, he's not too young. Like, this is great. I was like, I'm loving that I'm getting a, you know, a mom who's calling me about AAC for a 2 1/2 year old.
00:58:29
And I forgot to say that when he was able to isolate his index speaker, it was like the most exciting thing in the world because he was just able to access his device, you know, so much better.
00:58:41
Exactly. I'm think about all the learning that we were able to do therapy. Wise teaching you guys about a AAC and how to model all while he was able to learn those skills, right? That's the beautiful thing, is that if we shift our perspective away from the accuracy right in the initial stages and we think more longterm like yes, with time his fine motor index point will improve. His ability to, you know, attend and look at the different words and activate them will improve all those things he will learn how to do in the meantime where we were able to do a lot of parent education and training. You guys up on how to model and how to integrate this into your everyday life and all of those skills and then he caught up right? He index point. And now he's just like a little chatter box over there.
00:59:26
Yeah, and all. I mean, all the work was worth it. All the work was definitely worth it because, you know, Liam deserves to have his voice.
00:59:35
Absolutely. Thank you so much again, Ashley, for talking with Tech and Rachel Madel joined by Ashley Waterman. Thank you guys so much for listening and we'll talk to you guys next week. Thank you.