Episode 307: Kelley Coleman: Pushing Back Against an Incorrect AAC Evaluation

This week, Rachel interviews Kelley Coleman, speaker, author, and advocate! Kelley talks about her family’s AAC journey and her role as the mother of Aaron, a complex communicator in the 4th grade who uses AAC to communicate. She shares about her new book, Everything No One Tells You About Parenting a Disabled Child, as well as some of the high- and lowlights of her family’s AAC journey, including when Aaron’s school SLP suggested he go from high-tech AAC to a picture flip book!

Before the interview, Rachel shares about turning a client's questions about her microphone into a naturally occurring communication opportunity about podcasting - that also supported his independence!

Key ideas this week:

🔑 The goal shouldn’t bet just be communication for an AAC user, it should be autonomous communication. Not every student can communicate independently, but every AAC user can learn to communicate autonomously (e.g. share what they want to say, when they want to say it). Rachel was against the flip book because, among other reasons, Aaron wasn't physically able to use it independently. 

🔑 Kelley was told by her school SLP, “The only way Aaron will learn to communicate is if you use this flip book with 100% fidelity.” Kelley had so many responsibilities at the time, she couldn’t be with Aaron at every moment, and it made her feel like she was going to fail before she started. You have to meet parents where they are at and make modeling sustainable - something small every day is better than being so overwhelmed that you don’t even start! 

🔑 People who support AAC users should always try and keep an open mind in areas where they are not familiar.  Often, when a person can’t do something, it isn’t  because they are incapable - it’s because we haven’t supported that skill well enough yet!

🔑 Kelley says, as a parent, you should always be cognizant that the members of your IEP team may be providing services to your child for months (or even years) after that IEP meeting. It doesn't always make sense to yell at someone who is going to be providing services to your child for months (or even years) afterwards.

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 I'm here with Rachel Madel. Rachel, what's going on?

00:00:13
I have a story, Chris.

00:00:15
Oh, can't wait. All right. Am I a part of it?

00:00:18
You are a part of it. Yes. I've primed you. I've sent you this ahead of time, and I was like, I have to talk about this on the podcast.

00:00:27
I wasn't sure which story you were going to tell, so I was like, is it the one that I'm in? Okay, good.

00:00:31
Yes.

00:00:32
Okay, so I'm working with one of my students. He's a teenager. He's autistic, and he's actually not an AAC user. But we are using some assistive technology tools with him to help him with writing. We're using text to speech, speech to text, a lot of tools.

00:00:48
And one of my biggest goals for this student is to have him become more independent. He's very much reliant on other adults around him to kind of help him and support him and give him answers. And I feel like he's just had a lot of conditioning in this area. He has a behavioral support at school, and he's just kind of learned that if I just don't have an answer, I don't know, someone will tell me. And I think that this is one of the biggest challenges that paraprofessionals face, is how do we provide just enough support for our students so that they can become independent learners, but also not venture into the territory of just giving them answers and providing too much support.

00:01:40
Right.

00:01:41
So a lot of what we do in my sessions is, again, we're practicing more literacy skills, reading, writing, and really just problem solving, because I'm like, I want this kid who's 16 to be independent. He has great language skills. Obviously, we work on some inferential thinking and perspective taking, some social, pragmatic stuff, too. But he's really bright and really smart. And so the other day, and what's really cool about our sessions is that I see where it takes us.

00:02:11
It's very much in flow, and I'm just, like, talking to him about his day, and I don't really come with much of a plan. And it's like a really fun kind of exercise for me as a clinician because I'm thinking on my feet, like, okay, where am I going to go with this? And really, what are the things that come up in a naturally occurring way that we can work on? So, my session happened with him right after I did a podcast recording with you, Chris. And so my microphone was on my desk, and so that sparked a conversation like, what is that?

00:02:42
I was like, this is my microphone. And so the students, like, asking some really great questions. Know, Miss Rachel, why do you have a microphone? I'm like, great question. I actually have a podcast.

00:02:53
And he looks at me and I'm like, do you know what a podcast is? Because, again, one of the things we're working on is when he doesn't know what something is, he comes across a word he's not sure of, either asking for help or at least kind of admitting he's not sure, because typically what happens is it's just like the conversation halts. There is no response. He's just like, so, you know, I give him a little bit of time, and he's like, I don't know what a podcast is. I'm like, how would you figure out what a podcast is?

00:03:23
So he now knows when I cue him and I tee it up that way, he asks Siri, which is great. He's like, hey, siri, what's a podcast? And so he figures out what a podcast is. I'm, like, activating my Siri right now. And so he's learning what a podcast is.

00:03:39
I'm like, do you think you can figure out what my podcast. Like, how do you figure out what my podcast is? My podcast is on the Internet. You have access to the Internet. Like, what's my podcast?

00:03:51
And so it's so cute. He types in, what is Rachel's podcast on? You know, came up with some results that weren't talking with tech. And he's, like, scrolling around. Like, you can tell he's, like, a little stuck.

00:04:09
And we also are working on, can you be more specific? And so he, for a long time, did not understand what that meant, which I feel like, as an aside, so often we say things like, be more specific for a student who doesn't understand what the word specific means, which is a very nuanced word, right? I oftentimes will work on kind of this triangle hierarchy. So the top of the triangle is super specific, and the bottom of the triangle at the base is very general. And I'll say something like, okay, let's talk about toys.

00:04:43
Let's be more specific. And I kind of go through each step of making it more specific. And in the top, it's like a small red ball. I'm like, great. That's so specific.

00:04:52
So anyway, we've been working on this skill, so I'm like, maybe we could be more specific. So then he's thinking, and he looks, and he's like, I'm like, what information could you add to this? To be more specific, that would probably come out with my podcast. He's like thinking, thinking. He's like, oh, like your name?

00:05:12
And so I'm like, yeah, my last name. Good idea. So then he types in, what is Rachel Madel's podcast? And of course, talking with tech comes up. He sees my picture.

00:05:21
He's like, miss Rachel, it's like, you found me. He's like talking with tech, an AAC podcast, and he's just like, so excited that he found it. And then he sees you, Chris, on our art for our podcast, right? He's like, who is Chris Bougaj? And I'm like, his name is actually Chris Bouguet.

00:05:45
And he says, I sent you this video of him. He says, oh, bougie, that's Italian, which I thought was so funny. And then I said, I don't think he's Italian. And then you told me, actually, that's not true, which is so funny. And I'll let you kind of comment on that.

00:06:02
But it was such a great moment, and he was so excited. And then what was really cool is that led to a whole conversation around podcasts. And I was like, what are some podcasts that you would want to listen to? What's some areas that you're really interested in? He says, electricity, which I would have never known that about this student.

00:06:19
I've been working with him for years, and I'm like, electricity? I'm like, well, let's see if there's some electricity podcasts. And so he's like figuring out what he can type in to find electricity podcasts. So, anyway, it was just a really great story showcasing how we can really help empower students to become independent. They can utilize technology to get answers to the questions they have, and we can kind of nudge them and guide them along to kind of really get them in the right place.

00:06:45
But so often we just jump in and we just tell students, oh, a podcast is kind of like, I could have very easily defined what a podcast was, told him what my podcast title was, and instead I kind of empowered him to figure out the information on his own. And he was so excited that he learned it and could do it. And it just was an awesome, awesome story to kind of, I feel like, share on the podcast because it was really cute because it had to do with talking with tech, but it also was just a really good showcase of how we can help our students learn how to use technology.

00:07:18
So a phrase that keeps coming up in my own mind as you're telling the story is, who owns the learning? And we talk about that a little bit when we talk about coaching. Right. When we're talking to another adult, we could just tell you what to do, but that doesn't necessarily mean you own the learning. It just sort of reinforces my own ego about, yes, look at what I told you.

00:07:39
Same thing when working with a kid and same thing with a pair of professionals working with a kid. How many times could you ask reflective questions? So not questions like quizzing, do you know or tell me about? It's because I'm trying to find out if you know it or not. It's asking reflective questions.

00:07:59
And that's what I heard all through your story, is, well, how would you find out this answer? What would you do with it? What would you do next? And it just keeps asking questions so that he owns the learning.

00:08:10
Yeah, we went on, Chris, I didn't tell you this part of the session we went on, because I'm also trying to work on his just, like, independence. And so we've taken reading comprehension, and I've made it really useful in his everyday life because I feel like what happens is we'll just pull up these kind of narrative texts and different expository and all these different texts, and then we're in this asking comprehension questions and just, like, things that I'm like, and again, he's 16, and so I'm trying to empower him to become more independent. So the next thing, after we kind of went through this whole podcast, I'm like, you're going to be listening to podcasts before we know it. And then I was like, what do you want to get better at? What do you want to be?

00:08:56
You're almost an adult. What do you want to do that you see adults doing around you? And he's like, drive a car. And I was like, okay, I can't help him drive a car. I was like, what else do you want to do?

00:09:06
And he's like, I want to make chicken nuggets. And I'm like, awesome. What kind of chicken nuggets do you like? He's like, dinosaur chicken nuggets. I'm like, awesome.

00:09:17
You have an oven. He's like, yes. I'm like, do you have a toaster oven? Then that kind of branched off into a whole thing. He's like, what's a toaster oven?

00:09:25
I'm like, I don't know. What do you think a toaster oven is. So he does independently. He's like, hey, Siri, what's a toaster oven? Comes up with a definition.

00:09:31
In the definition, it had the word hybrid, which he didn't know what that word was. And so then I'm like, what do we do? And he's like, going down this path of figuring out the information. And so then what we did was he figured out he does have a toaster oven. He knows what a toaster oven is now.

00:09:47
And I kind of showcased hybrid. I had a teaching moment where I was like, a hybrid. We talked about hybrid animals and all these things to kind of teach that concept. But then I figured out the exact brand of dinosaur chicken nuggets that he likes. We google imaged it.

00:10:02
I pulled up the bag, the back of the bag, and I'm like, let's talk about how you would make chicken nuggets. And so what I'm working on is having him kind of go through the process of some type of activity where he wants to learn how to do it and become independent. And the coolest thing happened, Chris, because what happened was this is very typical of him and many of the students. He just started copying word for word. Like, what?

00:10:26
In his kind of Google Doc, he started just copying exactly the directions. I'm like, can you put this in your own words? Which he knows what that means now. And he started really thinking about it and also make it to you. He got to the end of the cooking, and I'm like, do you have any dips with your chicken nuggets?

00:10:42
He's like, I love ketchup. I'm like, don't forget the ketchup. That's specific to you, right? And as I see him, I start seeing him look down, and I'm like, what has he done? This is a virtual session, by the way.

00:10:54
And he's looking down at something as he's writing, and I'm like, what is he doing? I'm like, what are you looking at? And he shows me his phone, and he had independently taken a picture of the back of the chicken nuggets bag, so he didn't have to keep going between tabs. And I thought like, oh, my gosh, this is such a great moment. And I was so proud of him.

00:11:17
And I stopped, and I made a big deal out of it. I'm like, I love that you just did that. You're saving yourself so much time. What a great idea. He had, like, a huge smile on his face, but by the end of the session, we had a whole list of how he was going to make chicken nuggets.

00:11:32
And so I haven't seen him yet this week. I'm really excited. Did this kid make chicken nuggets independently? But it's like, that's another example of how I just am following his lead. And we've slowly but surely built all these skills up.

00:11:46
We've worked on making his bed and doing laundry and things around the house because he's eager to start doing things more independently. I think he just needs a little bit of support and guidance there. So, yeah, it was just a really great session.

00:12:00
All in all, I love how you broke it down into the steps and how he then owned it. That story of him figuring out, oh, well, this will be a faster for me so I don't have to flip tabs. I mean, what a great executive functioning skill that he will now use forever. And not just that particular skill of using my phone or using my image, but thinking, what's a faster way I can do this? Whatever that might be.

00:12:24
Right.

00:12:24
And whatever technology he might use for whatever task he has in the future in his life, he'll be like, what's a better way to do this? Which so many people don't ever even ask that question. And now he's going to do that.

00:12:34
Yes, exactly. And I have instilled that in him. And I'm not trying to kind of put extra pressure on the situation, but I'm always talking about, how do you think we could do that faster? Because ultimately, when we're asking kids to do things, anything, being efficient is awesome, because guess what? You get your homework done faster, and all of a sudden you can go do more things that you love.

00:12:58
Right? The same thing for us. We do our work faster and more efficiently. We have more time to do the things that we love and enjoy. And so I think there's an opportunity for students to really empower them to start critically thinking about, how could I be more efficient in this situation?

00:13:15
And, Chris, I feel like efficient people like you, and, like, that's just how we're. I'm like, okay, like, I did this, like, I'm going to record it, and then I'm never going to have to teach someone this. Know, I'm just wired that way. But I feel like, again, this is a skill that we can teach our students that we're working with. How can we learn to be faster and more efficient?

00:13:33
Because that's motivation, right? There's motivation to get things done more efficiently. And again, I think sometimes our students need a little bit of guidance and a nudge in that direction, but it's really cool after years of kind of instilling in him, like, how do you think we could do that faster? It's just like, all of a sudden, it's clicked. And he's like, yes, I'm starting to ask the question, how can I do this faster?

00:13:55
And it was just like, such a cool thing to see.

00:13:57
Yeah, that's awesome. It's almost like you became a little bit of his inner monologue because you've been asking him these questions. Now he's transferred that to his own mind to ask those awesome, awesome stuff. All right, I have a question for you. Speaking of questions, do we have any new Patreon supporters?

00:14:17
And while you're looking, let me ask, do any of them have the last name Devino? Because that was my original last name. So when I was born, you were asking, like you said, Chris, actually, I am italian. My mother and my father, my biological father, his name was Fred Devino. And then a few years after I was born, my mom left him and got married again to my dad, Jerry.

00:14:50
Jerry Bougie or Theodore Bougie. He goes by both. My dad has two names. So that's where my biological name was, Christopher Devino. And then a few years into my life, it changed to be Christopher Bougie and Devino.

00:15:06
Devino's Italian.

00:15:08
Yeah. And I was like, what? I was like, he was right. How did he know? Okay, Chris Patreon, we have Lindsay, Nicole, Kathleen, all new Patreon members.

00:15:21
So thank you to all of you guys who support the podcast. It is the only way that we keep the lights on here at talking with tech, we have an amazing team. Luke and Michaela work really hard behind the scenes to make this podcast possible, and without your support, we just wouldn't be able to do it. So we just want to say thank you. Thank you.

00:15:37
Thank you to all of our Patreon supporters. Chris, what's going on inside the Patreon? I feel like we have so much, and people don't even know what it's all about. Sometimes we pop on here and talk about it, but let's go into a little more detail about what's going on in there.

00:15:50
Okay, well, if I were to just roll back and look at the most recent kind of bonus content that we put over there. So we've got something about Google's AI test kitchen. Are you familiar with that resource?

00:16:02
No.

00:16:03
Definitely check it out.

00:16:04
I'm going to go into our Patreon right now and learn about mean.

00:16:07
I don't want to give it away. You could google it right now if you wanted to, but if you were in Patreon, you'd already know about it because there's all sorts of resources in there about creating music and images and text and games that you can play with it. There's another AI tool called Diffit for educators was posted in there. And then this is the last three that we've had at the time of this recording is another resource called the what works clearinghouse. And that is really a great way to find research based strategies.

00:16:38
So, you know, what works in education, it's a whole place that you can go search instead of just searching the Internet. Let me search there first to find out if this educational strategy that I'm hearing about, does it have evidence behind it to suggest that it actually works? So those are just three examples of recent resources that we post in there. Usually it's a resource a day or a resource a week, I should say. And there's many more in the back.

00:17:02
I've mentioned one other one. If you haven't seen the pixie pal polar plunge penance, go check it out. If you want to go see me get sprayed with freezing cold water, there's a video for you.

00:17:16
Yeah, there's always some behind the scenes in there that are really fun. And we're always thinking like, oh, we can add this to our Patreon. What's really fun, Chris, is know we oftentimes will meet people who listen to the podcast, and I feel like when they're a Patreon member, they say they're a Patreon member. And I don't want to give preferential treatment to people, but I'm like, oh my gosh, you're a super fan of talking with tech. I can't wait to dive in and grab a picture and honestly just say thank you because again, your support is so appreciated.

00:17:50
It's really so valuable to us, and we're just super grateful. There's tons and tons of content in our Patreon, and I give away tons of my paid resources in there. If you go back through the archives, I'm always sharing my new therapy ideas that I'm like, oh my gosh, this is so great. I share it in our Patreon. So there's definitely a lot to check out there.

00:18:13
And yeah, we just really appreciate your support. So if you would love to join our Patreon. Patreon.com backslash talking with tech is how you get there. And we're just really grateful for you guys.

00:18:24
Tell us about the interview today.

00:18:27
I'm super excited, Chris. I had the pleasure of interviewing Kelly Coleman, who is actually a client in my practice. So Kelly is an amazing mom to Erin, and I'm really excited the timing of this interview because she just released a book. And I'm really excited to not only share some of kind of the things that she's learned throughout her journey with her son Aaron, who is an AAC user. But we also share a really tricky situation that Kelly and I had to navigate.

00:19:01
In a nutshell, her son had high tech AAC, and the team at school, mostly the SLP, was recommending that we kind of get rid of the high tech AAC and go to some type of picture flipbook. And that's when I was pulled in. That's when Kelly met me and was like, here's my situation. And I was like, not on my watch. And I didn't even need to meet him.

00:19:28
But then once I did meet him, I was like, absolutely not. The student has language, and so her and I share kind of that journey and how we really advocated to this whole team. He is not only fully capable, but he actually has language and is using it. And he needs more modeling, he needs more support. He needs a team of people around him who believe that he is able to learn how to communicate through AAC.

00:20:00
And, yeah, it was just, like, really great. Kelly is just an awesome human, and I really love just her energy. She's really funny, and I'm really excited to share her book, which is such a valuable resource to not only parents who are going through this journey, but I also think as educators, when we understand the parent perspective, we're better able to help support families in the work that we do. And so really excited to share my interview that I did with Kelly Coleman.

00:20:39
If you enjoy talking with tech, we could use your help in spreading the word about the podcast. Please take a moment to leave us a review on iTunes. The more positive reviews the podcast gets, the easier it becomes for others to find it. The more people who find the podcast, the more the word spreads about how to effectively consider and implement AAC and who doesn't want that? If that sounds good to you, please take a moment and give the podcast a quick review.

00:21:02
We'd so very much appreciate it. Now let's get back into the episode.

00:21:14
Welcome to talking with Tech. I'm your host, Rachel Madel, joined today by Kelley Coleman. Kelley, I'm so excited to have you here.

00:21:21
Thank you for inviting me I feel like this conversation is long overdue since we first spoke. And I think I was in tears for most of our first conversation because I was so frustrated with where we were with our AAC journey. And then partly because I was like, oh, my gosh, someone understands and isn't gaslighting me. So thank you for not gaslighting me.

00:21:46
And making me think I'm just bananas.

00:21:50
For thinking that my child is able to communicate.

00:21:52
Thanks for course, Kelley. And so, you know, for our listeners who are listening, Kelley is a client of mine and she came to me. When was it, Kelley?

00:22:01
Was it like a year ago?

00:22:03
Not even a year ago. It was the end of.

00:22:06
Okay, okay.

00:22:07
So we're coming up almost on a year, and unfortunately, you came to me, Kelley, just because you were having a lot of struggles with your journey, with your son, with AAC. And so let's just start off by introducing yourself and telling our listeners kind.

00:22:22
Of who you are.

00:22:23
Yes. So my name is Kelley Coleman, as you said, and I am a mom, I'm a speaker, I'm an advocate, I'm an author of a book that is about to come out called everything no one tells you about parenting a disabled child. Your guide to the essential systems services and supports. Longest title in the world. But that's what it is, and it's not boring.

00:22:44
It's actually a fun and funny read, but it's all the basics of how to actually do all of the paperwork and the stuff for our kiddos with disabilities. Speaking of kids with disabilities, I have two amazing boys. Our older son is twelve and typical and plays the tuba and the electric guitar and makes his own movies and whittles and is a unique flower. Our other son is actually even more unique. Aaron is ten years old and loves airplanes and swimming and is the mayor of Trader Joe's and has fabulous boy band hair.

00:23:20
He also has multiple disabilities, including a yet undiagnosed genetic syndrome. And how that presents is with sub diagnoses of autism, cerebral palsy, epilepsy, cortical vision impairment, microcephaly, feeding tube, challenges with sensory processing, auditory processing, gross motor, fine motor. He's excessively handsome. He's just like checking all the boxes. So when I'm speaking with other families who have other kids with disabilities, I feel like our kids always have many similarities and many differences because we check a lot of boxes.

00:24:03
That's a very long list of diagnoses, which I feel like when you think about it too. So often we're kind of looking at kids with disabilities and we're looking at ieps before we know them. We're looking at progress reports and things like that. And I feel like having all those diagnosis. There's a certain kind of mindset that people have when they go into probably even just meeting your son for the first time.

00:24:29
So can you speak to that a little bit? Because I feel like that there's a component to that. I feel like when you have a child with disabilities and you have, like you just said, a kind of laundry list of diagnoses.

00:24:41
Yes.

00:24:41
And what's interesting is, I think, so.

00:24:45
Important to talk about these preconceptions in terms of when people and when practitioners meet Erin, but also when they meet.

00:24:53
Me and meet our family and the.

00:24:56
Preconceptions about me that have hindered how therapists work with my child. So we'll come back to that in a minute.

00:25:04
So with Aaron, I make that list.

00:25:08
And so more often than not, people.

00:25:10
Go, oh, because instantly that's like a.

00:25:15
Flashing red light of tragedy. And I'm like, no, actually he is happy and vibrant and it's like this is his world and we are just living in it. But too many people, and I know you see this every day, make assumptions when they hear autism, cerebral palsy, any sort of impairment that they say, oh, here are the boxes this person checks. Here's how to do. Um, so here's what we're going to do with them.

00:25:48
Because Aaron's overall diagnosis is unknown, everything's.

00:25:54
A question mark with him. And we do him and other children.

00:25:59
A disservice when we make presumptions and.

00:26:03
We dig in, even when they're showing.

00:26:05
Us we're wrong and we.

00:26:07
I've done this. Practitioners, others have done this. When people dig in so hard to, here's what I know and here's what I am assuming about this child and about this learner and this person's ability and putting a ceiling on that is detrimental, obviously to him. But also for practitioners listening to this.

00:26:33
A kid like Aaron is such an.

00:26:36
Opportunity for your own professional growth, and you have the choice to say, here's what I know, here's what we're doing. If he can't do this, he is.

00:26:45
Incapable, which is a word I've heard.

00:26:48
And we'll come back to that, too.

00:26:50
Versus if you say, well, here's a kid, okay, we'll do this and lean on what you know, but lean even.

00:27:01
More on what he is showing you and the path he is taking you down. It might be a path you have never heard of.

00:27:09
Before.

00:27:09
Maybe that doesn't exist yet, but kids like Erin are a constant source of surprise and growth for all of us.

00:27:19
And it's actually a pretty amazing ride once you give into that.

00:27:24
I'm so happy that you brought that up, because one thing in my own clinical practice is I'm always kind of forgetting about diagnoses. I'm like, does he have a diagnosis about this? And I know you've been in my.

00:27:36
Practice for three years, but I feel.

00:27:38
Like it's a testament to exactly what you said.

00:27:41
Sure.

00:27:41
Do I look at diagnoses to get a sense of what I might have coming into my office? Absolutely.

00:27:48
But at the end of the day.

00:27:50
It'S about looking at the individual in front of you and just using your clinical experience to dive in and get started and pivot and change. So I feel like it's kind of a good reminder that these diagnoses are all very different, too. And there's so much variation within a single diagnosis, especially autism. Right. So it's just an important reminder to just look at the individual in front.

00:28:17
Of you and go from there instead.

00:28:20
Of all of these preconceived notions about whatever diagnoses that they have.

00:28:25
Absolutely.

00:28:26
And the reality is, you know, well.

00:28:28
AAC is a new modality compared to almost every other modality, and we serve.

00:28:38
Everyone best when we are reminded this is all, even its best, a work in progress. And a year from now and five and ten years from now, we are going to be doing everything now that.

00:28:52
We'Re doing now, much better. Totally.

00:28:54
So every kid is an opportunity to.

00:28:57
Say, what I'm doing is good, but it will become better. Yes.

00:29:02
I totally take that approach in my own therapy just because everything is always changing and we can always be growing and evolving with those changes if we choose to. Or we could choose, conversely, to kind of stay with what we know and get stuck in with whatever we learned, potentially in graduate school or whenever we learned it, and we can really be stunted in our growth and evolution as clinicians. And so, yeah, I am totally on board with that. You had mentioned kind of the preconceived notions about you when practitioners meet you, and so I definitely want to circle back to that, explain more detail what you mean.

00:29:42
Yes. So we have overall worked with amazing teams of therapists, teachers, doctors in our.

00:29:52
Journey somewhere that it took us a.

00:29:55
Very long time and literally many years to find the right fit was with our AAC journey. And part of that is because I.

00:30:05
Knew nothing about it. And Erin does have many support needs.

00:30:12
And those are medical and behavioral and a lot of things that are exhausting for me. I know a lot about my kid. I now know a lot about neurology and gastroenterology and cortical vision.

00:30:24
And just like all the things I.

00:30:28
Realize in looking back at our journey, because I am someone who leans forward, asks questions, and is articulate and knowledgeable, that assumptions were made that I had any idea what was going on or how to do or how to implement AAC. I was never trained. I never got like, hey, watch this video for real information. I never got follow these AAC users online. I got, got, do you need me.

00:31:03
To train you on this?

00:31:04
Do you know this right? And I got a lot of you know this, right? And because I was almost wholly ignorant.

00:31:12
To how to actually do this, I didn't know enough to say I got nothing.

00:31:19
So you actually need to teach me. And that happened especially when it came.

00:31:26
To the school setting where AAC was introduced to Aaron in preschool. I believe he was four years old.

00:31:38
We had tried a textbook in early intervention, and we can talk about all the reasons why that wasn't successful. There are many, and they're pretty clear.

00:31:49
The device was introduced in preschool and he's now in fourth grade.

00:31:55
And up until last year, spring, end.

00:31:59
Of third grade, it was being used almost 0% of his day, both at.

00:32:06
School and at home. And it just sat in his backpack.

00:32:11
During most of the school day because.

00:32:14
They'Re like, oh, he doesn't know how to use it.

00:32:16
What?

00:32:17
Of course he doesn't, because you haven't taught him.

00:32:19
That's your job.

00:32:21
I was never told the most basic things that I didn't know because this is not my thing. It's much more my thing now. I was not told. He needs constant availability of the device so that he will understand. This is his communication and these are his words.

00:32:43
I was literally never told that we need to model for him.

00:32:48
I probably could have figured that out.

00:32:50
But I've been exhausted and underslept for a decade now. I was not told. You were the first person to tell.

00:33:02
Me, and this was when Erin was in fourth grade.

00:33:06
The goal isn't communication. The goal is independent communication. And in all of our. Whether it was an early intervention, when Aaron's vision hadn't even developed, I believe, enough to see the textbook, whether it was these years of an iPad with a program on it sitting in his backpack during the school day, whether it.

00:33:31
Was other specialists who were saying, he.

00:33:35
Needs a flipbook to do all the things. Oh, by the way he can't actually hold the flipbook.

00:33:40
But you were the first person to say if you were to pursue the.

00:33:45
Flipbook, and you said it without judgments. And I so appreciated that about you because you were trying to figure out what is the right fit for Erin and for our family that will be sustainable to make it actually work. You said, will Erin be able to.

00:34:04
Take that, carry it and communicate with.

00:34:08
Another child on the playground? Will he be able to communicate with unfamiliar people? And I said, sure, I'll be there.

00:34:16
With him and I'll flip.

00:34:18
And you said, that's not the goal. Our goal isn't for Aaron to never leave your side for the rest of his. Then. And then you paused and you said, wait, is that your goal? Because if it is, this is a different conversation.

00:34:32
I was, no, no. I want him to have a life and be independent of mom because that's what we want for all of our children in whatever form that independence takes. Aaron is very social, very outgoing, and absolutely craves that independence. Other practitioners who were insisting on a flipbook, which he hated and shoved away and had no interest in, but they.

00:34:58
Were sure this was the thing. They kept pushing it, and I never.

00:35:04
Understood, and they certainly didn't understand. This will never be independent communication with Aaron.

00:35:11
If he gets lost in Ikea, this is useless to him.

00:35:16
If he wants to make a friend.

00:35:18
At the playground, this is useless to him.

00:35:22
Because if you're a ten year old dude and your mom comes over and.

00:35:25
Starts flipping a book, he's out.

00:35:28
No, exactly.

00:35:31
And understanding. He needs the device at all times.

00:35:36
That the goal is independent communication and that there needs to be basic training.

00:35:46
For everyone on the team. That includes me, my husband, his brother.

00:35:52
Who he's very close with, and the school team.

00:35:57
His school team is wonderful and enthusiastic. We've had some challenges with the SLP.

00:36:06
Both past and present.

00:36:10
His team can't wait to learn this.

00:36:12
But something I have come to understand through Aaron is that if a practitioner.

00:36:21
Does not know how to teach, my.

00:36:23
Child does not mean my child can't be taught.

00:36:29
It just means that practitioner does not have the experience relevant to my child. Therefore, this is not an appropriate person to be teaching, evaluating, and solely and untrainedly. There's my new word, working with my child.

00:36:48
Providing. If that's the person at school, that.

00:36:51
Person needs training on specifically how my.

00:36:55
Child is a learner.

00:36:58
And in a best case scenario, that person will go back to what we said before and said, this has been my greatest learning opportunity, and I believe.

00:37:07
The training that Aaron has received and.

00:37:11
That his classroom staff is receiving in.

00:37:14
AAC and his specific journey 100% is.

00:37:20
Benefiting every single child in that class.

00:37:24
Yeah, absolutely. I mean, we know that training, the.

00:37:28
Circle of support around a complex communicator is how they learn AAC and are successful with AAC. It's not just, let's put this system in front of a student and hope they can learn it right. And so my own clinical practice I've learned through the years, as I've been working in this very niche area of speech language pathology, is that it's absolutely essential, which I'm sure I can't remember if I said this during our initial call, but I'm sure I talked about it because it is the most important thing. Everybody around Aaron feels confident modeling language, knowing how to provide support when needed, and also how to back off that support so he can gain. Yeah, I mean, I think that that is such a critical piece and I know a lot of listeners of this podcast know that, but it's something that we really need to be leading with when we are sitting across from a family, introducing AAC for the first time, really impressing upon them the importance of modeling and also our job as communication partners to make sure that we are doing the best we possibly can for.

00:38:40
The students in front of us and.

00:38:44
For saying to the parents or whoever the communication partners are, what do you, not your child, but what do you need in order to be successful in this process? And I keep coming back to that because not only did I not need a training of, oh, here's how to add some new.

00:39:05
Like, I could have figured that out.

00:39:06
There's YouTube videos for that. I didn't figure out it in the rest totally, but there was one practitioner we saw who was one of several people who told us our son was incapable of learning to use a device.

00:39:18
With a screen, who had such rigid.

00:39:24
And extensive rules, we'll call them for how and when. And the constant nature of using the flipbook, I forget which form of flipbook it took.

00:39:39
Literally, we.

00:39:43
Tried to work with this person, and we know others who've had.

00:39:46
Tremendous success with this person.

00:39:48
We tried to work with this person.

00:39:50
And I literally was in tears often. And whenever I spoke with her, I would say things like, I hear what.

00:40:01
You'Re saying, I want so badly to do that, but I need to make dinner, I need to go to the bathroom, I need to put on everybody's shoes. What you are telling me that I.

00:40:13
Must do with 100% adherence, I will fail.

00:40:20
And even now I'm ready to tear up. I said, what you are asking me to do is fail. If you are saying, this is the only way.

00:40:29
And the answer was, yes, this is the only way.

00:40:32
And I was so desperate to make it work. And literally every day I went to bed thinking, I have failed my child because you know what, I needed to.

00:40:42
Eat because I wasn't available to him.

00:40:45
To flip the book and the things. And it was so overwhelming for me that was not sustainable for our family because I was honest that that was not sustainable for me. And it was such a relief when I finally said to myself, I'm actually not failing my child by finding a way that I can sustain my existence as a human as well as foster.

00:41:12
His growth and development.

00:41:18
That really gets me, because I feel like the work that I do in my clinical practice is a lot of parent coaching, and a lot of that involves when we're really trying to support.

00:41:31
Families, it's figuring out a way to make it sustainable.

00:41:36
That is my ultimate goal. Because you modeling one word in one routine, one time a day is way better than you saying, you know what? If I can't do it exactly right, I'm giving up and I'm not doing it at all. Right. We can build off of those small steps in the right direction.

00:41:54
And so it's very disheartening to hear your story, but I'm sure that there's a lot of people listening who that really can resonate with. Also, I know there's a lot of clinicians out there who perhaps, and I think it comes from the best of intentions. Like, I want to just share the information, and I know the more you model, the better it'll be. And it comes from a good place. But I think what's important about what you just shared is the message that you got was, I'm not doing enough, I'm failing, which is very disempowering.

00:42:29
And half the battle with AAC is getting momentum, feeling like you're doing the right thing, feeling like we're seeing progress. And so if we have communication partners that feel so defeated that they can't actually show up and have those amazing interactions and model that language, then you're going to just be in this loop where you're not making progress, and then you're feeling bad about that, and then.

00:42:51
It'S hard to get out of that rut. Absolutely. And to say it's okay if Aaron is stimming on the device and he is actually learning it, instead of looking.

00:43:06
At it and saying, he's stimming on the device. Therefore this is a toy to him. He does not understand that this is communication. He does not understand that this is his voice. Therefore he is incapable of using this.

00:43:21
And because he doesn't stem on a piece of paper, we're going to point.

00:43:24
To a piece of paper.

00:43:28
I want to double click on this because this is why you came to me. Right? So let's share that story of your experience with what was happening. I mean, you mentioned the flipbook. I definitely said a lot of flip book.

00:43:41
I definitely was like, you know, the flip book. I don't know about the flipbook. And to be fair, I did impress upon you the importance of independent communication. Not every child is able to independently communicate. All children are able to autonomously communicate, meaning they can communicate what they want to communicate.

00:44:01
Not every child can communicate independently. But when I saw Erin, I was like, he can. This is not a child who has very limited fine motor and in a wheelchair and having to use some type of partner assisted communication. Sometimes we do have children that have disabilities.

00:44:25
That partner communication is really the only thing that is successful.

00:44:31
It's the right thing for the family. There are reasons, obviously, that we have ac systems like that. But as soon as I met you guys, I was like, no. What I'm hearing is he's sometimes exploring on the device and maybe not using, quote unquote, it functionally all the time. And.

00:44:52
That was the reason why you.

00:44:55
Were hearing the message, we need to go to this flipbook. So I'll let you explain in more.

00:45:00
Detail what that experience was like.

00:45:03
That was a challenging experience.

00:45:07
I do agree with you that, of course, some individuals, independent communication is not their path.

00:45:15
And we know some children and adults who are remarkable and robust communicators with a partner. And that is no less than any other form of communication.

00:45:26
And it can be amazing because that.

00:45:30
Is their path, and that is the correct path for them. When we came to you in terms of communication, what Aaron had and was using constantly throughout his days, vocalizations, some consonant sounds, some vowel sounds for things.

00:45:50
Like on up, off brother ball, flush.

00:45:54
Mom, more, some sign language that looked like signs, some gestures that familiar people recognize those as his signs. And lots of isolating one finger and pointing, whether it was pointing at a toy or a person or the baby carrots at Trader Joe's, or we call it his jukebox, this radio thing that has a bunch of buttons that we program with his favorite songs. His brother drew tiny pictures, and it is essentially a music AAC device. But Aaron stands in front of it and selects his favorite songs. So when you saw us, he was already able to walk to his device, use one finger to turn it on, and properly find the button for the song that he wanted, push play.

00:46:43
He would get to the point when he wants the different one, and would do, and he would choose his very favorite songs. He was already showing us the ability to accurately isolate the finger, choose the.

00:46:54
Preferred song, turn it on when he.

00:46:57
Wanted, turn it off when we asked. He demonstrated a great deal of receptive language as well as expressive language. So that's what we were already seeing. We had done the pecs book in early intervention, that we kept trying to make work, and that was always a big fail. We had had this iPad that was mostly unused for years, and we had.

00:47:26
Seen a private practitioner who was telling.

00:47:29
Me I was failing if I wasn't do everything according to these very strict rules.

00:47:35
And we had an IEP meeting, and.

00:47:40
IEP meeting was coming up, and we got all of our evaluations in advance. And the thing that I think you.

00:47:46
And I are still kind of gobsmacked.

00:47:48
By is the SLP's evaluation. This was her first year at the school, her first year working with our child. The prior SLP really liked as a human, but didn't give me the training, and he believed Aaron could communicate, but was not an AAC expert, so didn't understand the fundamentals of how to implement it, but did keep writing it into the IEP. The current SLP turned in this report, where she said she literally used the word incapable, that he is incapable of learning to communicate on a device. And reasons for that included that he was so motivated when the device came out, that he just blocked everything else.

00:48:34
Out, that he was tapping and tapping and tapping.

00:48:37
So that was stimming because he wasn't making the communication that she desired him.

00:48:44
To make, and because his general excitement.

00:48:50
And squeals were just so overwhelming when.

00:48:53
The device came out.

00:48:55
At that point, the device, and this is all written into the report, which was the first time I was made aware of this, which I was shocked.

00:49:03
By at that point.

00:49:04
The device was being used for ten minutes during the school day, each school.

00:49:08
Day, during calendar time.

00:49:13
And one of the first things I said to you was, when he is.

00:49:18
Stimming, he is finding the month and.

00:49:20
Finding the day and finding the weather over and over and over and over, and telling you, sunny, sunny, sunny, January. Sunny, January, like, over and over. He was so excited.

00:49:30
He was telling us, I understand that.

00:49:35
This gets me what I want, because you know what?

00:49:37
I love calendar time.

00:49:41
And it was being put away.

00:49:45
And then it would get trotted out.

00:49:46
For a few minutes during a speech session. He would get so excited that he would get overwhelmed and start flapping and squealing and smiling and all his fabulous things. And because of all the stimming that.

00:49:58
Occurred, then the incorrect conclusion was that.

00:50:03
He is incapable of learning this. There was no modeling. There was no training. There was no constant access. There was no peer modeling.

00:50:10
There was no, like, nothing. There was just, you're stimming, you're incapable. And I'm sure every single person listening.

00:50:17
To this knows, actually, stimming has zero to do with your capability to do anything.

00:50:27
Yes, exactly. I remember that meeting. So we had a meeting, you, me, said SLP. I also remember that report. That report really got me.

00:50:39
I was shocked at that report.

00:50:41
It was one of the most egregious school related documents I've ever seen.

00:50:46
I completely agree. And then it was like, okay, this conversation where I'm coming in, saying to myself, like, how do I approach this? How do I, strategically, I know you and I talked. We, how do we approach like we want the best outcome, obviously. And I just remember pushback from the SLP saying basically that she's hunkered down with her report, basically trying to defend it.

00:51:21
And I remember the weather because first of all, when I read that report, I hadn't actually saw Aaron.

00:51:27
I hadn't actually seen him yet.

00:51:29
We had talked, but I hadn't seen him.

00:51:32
And when I saw all of the.

00:51:35
Communication that he had, all the gestures, signs, vocalizations, initiation, I was like, what? It was so far away from what that report reflected that I was in shock.

00:51:50
And then when we had that conversation with the SLP, I distinctly remember her.

00:51:59
Again, really trying to defend that report and saying, he's not capable of learning. And we talked about the one time a day that he was having access to the device, and they were modeling the device during calendar time, because that was what she said. My question was, when is he using the device, and what is he saying spontaneously? And when is he accurate? Because at first it was like, he's not using it.

00:52:23
He's using it as a toy. And I was like, okay, how do I ask the right question to make her realize he's not using it as a toy? Because I know for a fact he at least was using it during the calendar time, right? And so she did say, like, well, he is using it during calendar time. So then I'm like, okay, so he does use it.

00:52:40
And I remember saying this. So when we give him access to the device in a regularly scheduled routine and we model language for him, he can learn. So that's all that told me is that he can actually learn when he has a device in front of him and he's given modeling. And so it was just like one of those moments where I was just like, I'm in shock right now, but I share that story when I do speaking events. I'm like.

00:53:10
Because oftentimes we always hear this, like, oh, they just use it as a toy. They only stem on it. It's like these really hyperboles, right? This exaggerated statement of, they never use it.

00:53:25
And when I ask questions and I.

00:53:28
Get more information, it's my favorite thing to do, is be like, oh, well, they're using it functionally and they're using it accurately. And it sounds like there they can do it, too. And it's just like, so they aren't just using it as a toy. They aren't just using it, quote unquote, non functionally. And I feel like that was the.

00:53:44
Exact situation we had with that SLP, the exact situation.

00:53:49
And I love that you mentioned that we were strategic in how we conducted the conversation. My emotional gut reaction was to scream and yell.

00:54:00
However, there was absolutely no need, and.

00:54:04
That would have been 100% the wrong thing to do because that person remains.

00:54:09
On my IEP team.

00:54:11
And as parents and practitioners, we need.

00:54:14
To remember before we come out guns ablazing that.

00:54:19
Is this person going to continue to be in or impact my child's life or future or education? We don't always have a choice. This person is a perfectly lovely individual. I genuinely hope that she is learning and growing from this experience. But it was the right choice to handhold as much as we did and as much as I've continued to do.

00:54:45
Because I have an IEP meeting that.

00:54:48
Will come up again this spring and she will be in that room again.

00:54:52
Yeah.

00:54:52
It's a really important reminder. We can have a lot of emotional reactions about some of the things that we read and see and hear, and we can, in meetings, feel like, I 100% disagree with you, but we still have to play our cards right. We have to be strategic. We have to maintain our emotional state. And like you said, it's so important to continue to try to collaborate even when you vehemently disagree with what's happening.

00:55:26
Obviously, it's a balancing act because you.

00:55:28
Also have to advocate, which is exactly.

00:55:30
What you did and have done so beautifully. So I think that it's a really important lesson that we have to learn ways to be collaborative so that we can ultimately get the best outcome. Because when we're really butting heads with someone in a meeting or in a team, it's just like we have to figure out ways to come in the middle a little bit and to be flexible and to still be kind so that we can maintain the relationship as.

00:56:01
Best as we can.

00:56:02
Yes, and that can be very hard.

00:56:04
To do, but I've never regretted taking that path, and I think it is.

00:56:11
Always the right choice, just in case.

00:56:14
I'm happy to say that our IEP.

00:56:17
Team did disagree with the level of incapability and with the recommendation to discontinue AAC. And that has certainly become an essential part of his school day.

00:56:32
And also at home, we were playing.

00:56:37
Around with different programs. We switched to a different program than he had been using at school, which the SLP at school said that she, quote, completely agreed that the program he.

00:56:50
Had been using was wrong for him. And I'm like, why didn't you say.

00:56:54
That from day one you have access to all the programs because you're the district. So we switched to a program that was more appropriate and I believe Aaron finds very intuitive. So we started with you in March, and.

00:57:15
I would say he had almost no AAC use and proficiency.

00:57:23
So that was end of March in beginning of August.

00:57:29
So fewer than three months later, math.

00:57:33
Not my moment right now. I was sitting at the kitchen table with Aaron and having breakfast, and he had his device in front of him and was wanting to get up. And I said, aaron, first we need to eat breakfast.

00:57:46
And.

00:57:48
First we need to eat breakfast. And then his brother's name is Sean. And then I said, then we'll get in the car and we'll go get Sean at camp.

00:57:55
And I said, how do you feel about that? And, oh, I'm going to cry. Here I go. And he typed 100% on his own.

00:58:02
Excited.

00:58:03
Love, Sean.

00:58:07
That was months after being told that he was incapable of learning to use a device. And he never would have had those.

00:58:19
Words in that stage of his development in a flipbook of any sort.

00:58:25
Oh, man. Stories like that, I mean, especially, it's a direct impact of the work that we do in my practice. It's just so powerful to think about what an impact we can make. And it all starts with the belief that all children, regardless of their disabilities, can learn how to communicate with AAC. And the onus is on us to figure out how to make that possible.

00:58:50
And successful. And I won't sugarcoat it, because sometimes it's really tricky with Erin, I feel like it actually wasn't that hard to figure out compared to other very complex cases that I have. But it's not always easy, it's not always fast, but it's always possible. And that's where the mindset of believing in a child's potential really comes in. And it's the utmost of importance when we're thinking about complex communication needs in AAC, starting with mindset is such an important thing, and it's oftentimes overlooked, and people don't even recognize their own biases.

00:59:32
Ableism, all of those things. And so it really is the missing piece in a lot of situations like yours, where there's just been this roadblock and we can't seem to make progress. And my first question to myself as.

00:59:47
A clinician is, who on the team.

00:59:49
Has limiting beliefs about what's possible here? How are we actually putting a limit or a ceiling on a child's potential? And again, it doesn't always happen knowingly. We just have these kind of implicit biases that we're not even aware of. And it's just something that we really do need to be cognizant of as educators.

01:00:07
Yes, and I think a bias that.

01:00:09
We can all cop to having to.

01:00:13
Some degree that we need to chip away with, because it is just ableism and ignorance.

01:00:18
And all of these things is for.

01:00:22
Individuals who have been diagnosed with or do have cognitive or intellectual disabilities. The reality with Aaron, my best guess.

01:00:32
Is that he is intellectually disabled. However, how do we test or evaluate someone's intellectual ability or disability with their expressive language? If an individual has a deficit in.

01:00:54
An ability to express language, it does not equate automatically to a deficit in cognition. There are, I think, about individuals with Rhett syndrome who have crossed my path, who have spent years feeling like they're just living in a box and are able to communicate with an eye gaze, with a device, with a partner, with all these things, and are writing poetry. There are so many different types of.

01:01:24
Brains and people and communicators and many.

01:01:29
People, whether it's out in the world.

01:01:32
Or at school, and therapists, whomever, are.

01:01:36
Shocked at the degree not only of Aaron's communication, but the ability to express.

01:01:42
Not just now noun, noun identifying stuff, but emotions.

01:01:49
And if he's having big emotions, to push the button, to, say, frustrated, overwhelmed, different music, you know what? He doesn't like my music. And now I know how he feels about that. When we listen to the Ducktails theme song. It's happy, happy, happy.

01:02:09
That is a level of cognition that.

01:02:14
We have been able to evaluate more.

01:02:17
Appropriately because we have gained expressive language. And I think every single person needs.

01:02:26
To remember when crossing paths in any form with someone who we presume or we know has been diagnosed with an intellectual disability. I know everybody says presume competence, but let's actually talk about what that means. Presume that unless you are fully able to communicate 100% of everything going on in your brain, that I do not know 100% of everything going on in your brain. That's what that means.

01:02:55
Presume competence, to me, means presume that unless someone can communicate 100% that I.

01:03:06
Don'T know 100% because they haven't communicated that to me. That's what that means.

01:03:11
Totally.

01:03:11
I completely agree with that. And one of the biggest challenges is, like you said, it's like we have a student in front of us, and they might have a diagnosis of intellectual disability, and then all of a sudden, all of the presumptions that go with that diagnosis are just kind of like, locked onto that child, and they have a hard time doing any type of movement because of those, because, again, of those limiting beliefs. And on top of that, just we can't know what's going on in their head. And the expressive language really unlocks that. And we also know AaC takes time to learn.

01:03:54
So he has a lot more going on in his head than he is able to currently express. But that's where we have to keep coming in, keep modeling, keep teaching, keep showing him so that he's able to show us all that he knows. And it's been really cool to see how much he understands, knows, can communicate when he actually has access to the technology that he needs in order to do that.

01:04:17
Absolutely.

01:04:18
To the technology as well as the.

01:04:21
Appropriate people to train him and work with him.

01:04:27
Something I talk about in the book, there's a whole chapter about therapies.

01:04:30
Each chapter is a different thing of.

01:04:32
All the basics of the stuff. And in therapy, therapy should not be torture for your child. We should not be trying to therapy away the autism or the behavior. We should be like, who is this person and how are we fully leaning into them?

01:04:48
And we should also be really thinking.

01:04:52
About who is working with our child. Sometimes the availability is really limited, and I get that that is hard when you know someone isn't the right fit. You need to end that relationship and end it with your head held high. You do not need to apologize to them for firing them you just need.

01:05:16
To say, this is not the right fit.

01:05:18
Thank you for your efforts.

01:05:20
I wish you the best.

01:05:23
I keep coming back to that. We have a very successful and long standing relationship with many therapists, doctors, educators, the people who we have asked to leave our team.

01:05:38
It is always the right choice, and.

01:05:41
I have never regretted that. And I think parents need to remember.

01:05:45
The right communication system. And for some kids, it could be that flip book.

01:05:52
And if that flipbook is the thing, then you flip the heck out of that book. And that's amazing.

01:05:59
But you need to find the thing.

01:06:01
That works for that individual and the people that work with that individual.

01:06:05
Because my child absolutely did not trust.

01:06:10
The person who was making me cry.

01:06:12
Every time I sat down. He was never going to learn with.

01:06:16
Her, ever, because he knew she was.

01:06:18
Making me feel like crap.

01:06:20
I totally believe that kids know when someone doesn't believe in them, and I feel like that energy is just so disabling for any type of progress to be made. So, yes, I think that makes a lot of sense to me because I feel like kids know, just like we all know, we all have a sense that someone either cares about us, wants to see the best, believes in our potential, or the opposite of that. And so it's another really important reminder to just lead with that energy. Because kids know.

01:06:59
Absolutely.

01:07:00
It's like dating. You're not going to marry that person who's like talking about why your hair doesn't work.

01:07:05
No, that is not the person for you.

01:07:08
You know what? If you're making my mom cry, I'm not going to learn your flip book.

01:07:14
Oh, it's so good. Kelley, you mentioned your book. I want to talk about it. Tell me the impetus for it. Tell me more details.

01:07:22
By the time of this podcast episode, I think the book's available. So I'm really excited for you to.

01:07:28
Dive in and tell us, our audience about the book. Thank you.

01:07:31
This is the book that I desperately needed a decade ago. And as I was writing it, I was literally taking notes and I saved so much money from my insurance company as I was writing this book. So good work. Insurance chapter again, it's called everything no one tells you about parenting a disabled child, your guide to the essential system, services, and supports, and it's the handbook of how to actually do this. We get thrown into this.

01:08:00
Most of us have no knowledge of.

01:08:03
Any of this, much less social service systems and financial planning and future care plans, much less AAC and finding a practitioner, a specialist, or a neurologist, or working with a nurse so each chapter dives into a different topic to give the basics. My background is in coming up with ideas for talking animal movies. So it's conversational, it's fun, it's not eat your broccoli. Each chapter starts with a personal story. It has the basics of here are the questions everybody has, not just you.

01:08:39
It has a letter from another parent who's been on this journey for a while. It has all of my checklists and templates and worksheets that have been sitting on my computer for the last decade that I've been emailing to my friends when they need a school visit or when they're calling their insurance company or whatever. I'm like, I got a lot of lists people. And it also has interviews with over 40 experts, which I'm so excited about because I'm not a lawyer, I'm not a doctor. But to get people who have been doing this at a high level for such a long time, including I have, amazingly, one of the final interviews with Judy Human, who, if your listeners don't know, is known as the mother of the disability rights movement.

01:09:22
She unfortunately passed away in March of.

01:09:26
Last year, and I sent her a.

01:09:30
Cold email through her website. And much to my surprise, she emailed back that day and was very engaged. I was able to have a long interview with her in person and she ended by saying, this is too important to stop now. Let's schedule more time. And we continued our zooms.

01:09:48
And I would get calls from her while I was grocery shopping.

01:09:51
And she was really engaged because she.

01:09:56
As a disabled person, as someone who.

01:09:58
Has fought for these rights at very.

01:10:00
High levels and worked in government and.

01:10:02
Advocacy her whole career, understands the importance.

01:10:07
Of empowering parents from the beginning.

01:10:12
I may not be disabled, so I.

01:10:15
Don'T have the first hand experience that.

01:10:16
My child does, but I will be.

01:10:20
His caregiver for the rest of his life. And how I view that and how.

01:10:26
I view him will greatly impact his life.

01:10:30
So we talk about the ableism and.

01:10:32
The rights and all of the things, and Aaron would be further along in.

01:10:40
His journey if I had had this.

01:10:42
Book, because this has literally taken me a decade to figure out how to.

01:10:47
Do financial planning for a kid who will never live independently, but at the same time making a plan if I fall into a wood chipper and who's going to know what, no one knows how to do that.

01:10:59
And I had the incredible privilege of.

01:11:03
Being able to find the time in the last decade to learn all of this. And I'm so passionate about narrowing the gap in access to information. I check a lot of demographic boxes that give me a lot of privileges and from which my kid benefits tremendously.

01:11:21
And I am so passionate about eliminating barriers to access.

01:11:28
And a lot of that is just this basic knowledge. And if you walk into a specialist office with a list of questions, you know what?

01:11:35
I got your bullet point. List of questions.

01:11:37
You're good.

01:11:38
The specialist will treat you and your child differently than if you come in.

01:11:47
And you're a flailing mess. I've been that flailing mess, and it's a very different visit when you're empowered even with basic knowledge that you can actually understand and use. There are amazing books by lawyers of how to do ieps that I've tried to read and I can't get through because they freak me out.

01:12:07
But what's in here is like the.

01:12:09
Bullet points of how to actually do the things. And I'm so honored by the other parents and experts, many of whom are disabled themselves, who contributed. And it feels like a victory for.

01:12:23
All of us because we got to.

01:12:26
Stop reinventing these same wheels. It is such a waste of time and energy and money.

01:12:33
And I wrote this book because I.

01:12:36
Honestly think people can save the time.

01:12:38
And energy and money and just go.

01:12:41
To the park with your kids instead of spending all the time with that paperwork.

01:12:45
Kelley, I'm so excited to read this book. I love you. I feel like you are such a fun energy and I can only imagine your writing style is also super fun and engaging. Even just your emails I love. So I'm excited to read the book.

01:13:02
We'll definitely link to it in the show notes. Where can people reach you if they're interested in learning more and contacting you?

01:13:09
Absolutely. So my website is where to find everything. KelleyColeman.com and that's KelleyColeman.com and would love to connect with folks and especially feedback on the book. And as I'm figuring out what the next one in the series will be, I really look forward to supporting all of us, parent, caregivers and individuals with disabilities. Having a voice in this conversation is something that I'm excited to serve because, wow.

01:13:43
It's not only necessary, but it's really helpful.

01:13:47
I know, it really is. And I'm really excited that you were able to come on today. Thank you for sharing your time. And of course, I feel like we have a really great story that we shared just our experience together that we've been talking about for a while, wanting you to come on the podcast. So I'm excited we could kind of kill two birds with 1 st here.

01:14:06
And yeah, just excited to have you on and can't wait for this book.

01:14:10
Thank you so much. I so appreciate all that you do.

01:14:14
All that I've learned from you as.

01:14:17
A practitioner, but also this podcast, it is a great service to families.

01:14:21
So thank you.

01:14:23
Thank you so much, Kelley, for talking with tech. I'm Rachel Madel, joined by Kelley Coleman. Thank you guys so much for listening, and we'll talk to you next week.