Communicating Beyond Words Using AAC Devices

Show Notes:

Tired of feeling helpless? Learn how to advocate for your child’s communication needs.

In this interview, Tonya speaks with Julia Pearce, a mother, disability advocate, author, and assistive technology specialist, about the use of AAC devices (Augmentative and Alternative Communication devices) for children with speech impairments.

Pearce shares her personal experience with her son, Dallin, who used various AAC devices throughout his life. She emphasizes the importance of early intervention and assessment to determine the best communication tools for each child.

The conversation highlights the different types of AAC devices available, from simple one-button devices to complex speech-generating systems. Pearce stresses the importance of involving parents in the decision-making process and the role of assistive technology teams in providing support and guidance.

The interview also touches on the broader concept of assistive technology, which encompasses tools to support various needs, including reading, writing, and mobility. Pearce encourages parents to advocate for their children’s access to assistive technology and to collaborate with educators and therapists to find the best solutions. Overall, the interview provides valuable insights into the world of AAC devices and empowers parents to explore options for their children with communication challenges.

Be sure to catch Julia’s interview about parenting a child with epilepsy in Episode #102!

Connect with Julia:

• Website: https://juliapearce.net/
• Instagram: https://www.instagram.com/runnamokk/
• Facebook: https://www.facebook.com/julia.pearce.754/
• LinkedIn: https://www.linkedin.com/in/julia-pearce-0b06b01b/

Purchase Julia’s book: https://amzn.to/3WmQuck

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #103: How AAC Devices Can Connect Your Child to the World
Communicating Beyond Words Using AAC Devices

(Recorded April 10, 2024)

Full Transcript of Interview:

Julia: When I think about assistive technology, it gave him a way to say what he wanted, how to tell jokes, to decide who he wanted to talk to and when, and how much information he was going to give.

Tonya: Imagine a world where your child can’t tell you what they need, want, or feel. For parents of children with limited speech, finding ways to connect and understand their child can be incredibly challenging.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wallum, and I’m glad you’re here. Today, we’re diving into the world of augmentative and alternative communication. or AAC devices with special guest Julia Pierce. She’s a mother, disability advocate, author, and assistive technology specialist who has firsthand experience navigating this journey.

Julia, welcome back to Water Prairie.

It’s great to be here. I love these topics.

This has been fun. We, we learned a lot about you and of Dallin’s story last week and listeners, if you missed that, make sure that you go back and listen to the story. It’s um, it’s, it’s a very heartwarming story, but um, but it, It’s sober as well.

So, um, but it, it’ll tell you a little bit more about where we’re coming in from. So if you did miss it, make sure that you go back and catch that. Today, though, I want to talk about, you mentioned how he was, he used sign when he was younger, but that he tried different devices. And I want to talk about that some, because some of our families that are listening are familiar with AAC devices or they’re not familiar with it yet, but they’ve had it mentioned and they want to know more about it.

So can you tell me a little bit more about the different types of AAC devices that Dallin used? Okay. And how they helped him to communicate more effectively.

This is one of my most favorite things. I may have mentioned to you when we were speaking that assistive technology and augmentative alternative communication is how half of my body flows.

Dallin is my other half. And so bringing them together is pure joy for me. Dallin did sign Use sign language, his signs were adapted, he had lost his intrinsic muscles, those teeny tiny muscles that help us do a thousand things, but also accurately sign and yet anybody who knew American sign language or other types of sign language could read his sign.

And so he did that. First, when he came home from the hospital, he did survive an illness and that took all of his communication, expressive speaking language. When he got home from the hospital, he needed to let us know what he needed because he was able to do that before he was ill. And so. A speech therapist, a speech language pathologist had recommended teaching sign language to him right away so that he could have quick access.

We didn’t know if it was going to work. I started teaching him sign language. He learned it as quickly as I could show it to him. His first sign was cracker. Uh, Joy, he was two, he needed to ask for a cracker, he couldn’t open up the cupboards, and we taught it to him as quickly as we could. From there, once he started in preschool, he had an assessment.

In our state, we have assistive technology teams in each of our school districts. That’s not the usual or common thing across Especially in the United States, sometimes there are, but in ours, we had an assistive technology come team, come and do an assessment, complete one with him. It basically meant they watched him, saw what he was needing to.

Let others know about, when he was in preschool, he was about four years old, they had him start to learn about language and they found that maybe having a one button speech device that would say one thing so he could ask for help or request markers or call for a friend But it needed to start making sense for him because he was signing, but not everybody could understand those adapted signs.

And so that’s where he started was with sign language, which is its own language. And then they started using augmented and alternative communication or AAC with him when he was four. Every other year from there on out, that assistive technology team came and did either an updated assessment or a follow up with him and he started to use additional voice output devices, speech generating devices throughout his life.

When he was seven years old, he trialed one that he thought was so cool because he was in charge. of how loud the volume could go, when he could change the volume and what it said on the front. This is before any of the tablets like that we use now. Sometimes it’s on what we, the iPad or some other of the other types of tablets.

This is so many years before that. So we trialed a device with this assistive technology team and he was in charge of when To change that overlay, he could turn up the volume. He could yell at us from across the house and say that he needed more, or this is hilarious or whatever it was. When he was seven, he got his first piece of equipment for home that helped him communicate along with his sign language.

Then he added more things in school. We added more things at home and it continued from there. Technology also changed across all of those years. He got another device when he was 15 because he decided he needed to say more to people who didn’t understand his signs.

Did he at any time use multiple types of devices for different situations?

He did, and in school, in his preschool, and elementary, there might be that one button sitting for requesting or commenting, so I, you know, I need more milk, because snacks is when you always need more milk, when you need to put that cookie in, and you’re, they’re making a mess, and they don’t want, whatever it is, but what if over in the, the, With the shaving cream, they, you need to clean up and then there would be something about, I need help to clean up.

Eventually, our son had seven devices that he placed in our house for different things at different times with sometimes different people. Yeah. You would say, this person isn’t going to learn more than this, so I’m going to keep it simple for you. And I’m only going to use this. He had Um, two systems that were more complex that he knew would confuse some people.

So he didn’t use them with everyone. He was a very astute communicator. And then he had a couple systems that he would, we used, we called them pop talks in our house. They were quick. Come and look at this. You’ll never believe what’s happening. This is so funny. Oh, you missed it. Come here fast. They were so quick because if I couldn’t see his sign language, he still needed to get my attention.

And then we would communicate with other ways. He was also great at rolling his eyes and slapping his leg. And he used everything around him for communication. And so do a bunch of us. So do a bunch of us. I’ve been rolling my eyes and lifting my eyebrows. You guys have all seen. And you hear the tone in my voice and my shoulder just went up. And that’s all part of communication as well.

Well, I think about, you know, if signing was his primary language, it sounds like, so that is more expressive with the full body language. And the facial expressions and everything else. So it sounds like he, he kept using that no matter what he was using.

He did. He used that from the week he got home from the hospital after his illness until the week that, um, he did pass away due to his disability. He used sign language until that final week of his life, along with many other communication systems. He used everything. Every chance he could, he used it all.

Now, was he, was he around when iPads were being used for, for an AAC device?

So I love the iPads because they’ve been out for, Almost 12 years, about 12 years now, they came into play right as he was coming near end of life. And he, at that point he had seven different systems and the assistive technology team and his teachers were so wanting to try it. They’re like, let’s try this.

He had established communication systems at that point. Was very kind. And he let them try things with them and then he gently closed the iPad case and put it back into their bag and said, I’m good.

I have not worked with an AAC device. I’m familiar with what it is, but I haven’t used it myself. But my thought was the number of screens that could be loaded into that.

Then you were saying from different environments, he could just switch to that simplified screen for those who don’t understand what he’s trying to do and then switch to the more complicated ones for, for the family and everyone else.

Yeah. So the device he did have was similar to. What we have now on the iPad. It was on about the size. It was about this big. So it was about the size of my iPhone. Now it was about that size. It did the same thing that the apps do the communication apps do now. So it was a very robust, full communication system.

So, was he your first introduction for you personally to assistive technology?

He was. Yeah. When he started having those assessments by our assistive technology team in the district, I didn’t even know what the words meant. The teacher said, would you like this assessment? And I agreed and didn’t know what I was agreeing to. And the, the team came out, they included me during the discussions, they showed me what would be.

I’m happening. They taught me this new language about language communication and all of the things and was very, we were very much a part of things together. Dallin and I and the assistive technology team and all of his education folk. We were all there together.

And now you’re working in the field of assistive technology. How did that change come about?

So when I was in. I had a situation where I began working for the school district. He was in preschool, actually, and a job came up. And part of what happens sometimes is when families are looking for work, which was what I was doing, one came up in the schools. And so I could go to work while he was in preschool, and then I would get back home.

So I was working the amount of time. That he was in school and then things changed with his health. So when his things changed, I was no longer able to work in that position in the school district. The assistive technology team actually had a position that they needed to have filled. And I had known them for the previous nine years because of their work with And they knew that I was.

Just voracious. I would learn anything and put anything into practice. They could give me a new device to learn for Dallin. And I would take back in the day, the manual, which is four to five inches. Nothing was online back in those days. And they said, okay, you have 30 days with this. Good luck. And I would say, awesome.

And I would take it everywhere with me. I would take it to parties and people. Are you doing? Devices were massive back in the day. So I started working for the assistive technology team in the district. And I worked there with that team for 10 years and learned and worked alongside of this marvelous team that had been with our son for the previous nine years, and that’s where it began.

They taught me and I went to conferences and. I’ve been now working in assistive technology for 20 plus years, almost 25 years. I now do it at a different level within our state. Still are connected with all of our school teams. And that was the beginning of it with some really incredible, powerful, powerfully inclined people to help students learn and grow. And do what their goals are as the students determine it,

I can imagine too how many families appreciated having you there because you understood as a parent, some of the confusion that there is and trying to learn, but then having that sensitivity of seeing the success that your son had with it and being able to help expose their, their, their children and then the families as well to, to new technologies. And this goes beyond just AAC devices.

Dallin used augmentative equipment for communication. He also needed supports with executive function, knowing this was going to happen and being able to predict what was going to happen. And he also needed things for writing and for mobility later. So assistive technology. It’s. This massive category under, um, IDEA, Individuals with Disabilities Education Act, and so powerfully supported.

So can you, can you give us an idea of some of the different types? So you’ve, you’ve mentioned a few things there. What are, what are some of the most common areas that a might hear that There’s a recommendation that their child tries out something.

So within the broad scope of assistive technology, there’s ways to support people with reading through what’s, um, could be called like text to speech. So you hear what is, um, on the screen if people have a hard time with reading and writing the opposite, which is speech to text. And. The, so that’s when you speak.

So we use it all the time. Some of us have it on our phones where you see the microphone. It’s also in many of our computers. So it’s utilizing those types of things with vision. It sounds like many of us. may need some support. I have my husband using enlarged text. There’s also screen readers that help people when they need to have things read that’s on the screen.

There’s executive function, that’s knowing where you’re going next. That’s why I have three calendars. Knowing where I’m going next and what I’m supposed to be doing and who’s going to be there. There’s so many things. And then with communication, there’s a It’s just a broad array for communication supports and then we get into the fun parts.

There’s assistive technology to help with leisure, which is having fun. We use that word leisure and I think of a leisure suit and I should be in Arizona. Um, but it’s having fun. It’s why our son, when he needed to go from skiing on his feet to sitting down skiing, that was an adaptation and assistive technology for his skiing.

There’s so many fun, fun things and he was the one who helped us decide it. And that’s what we get to do with assistive technology.

So it’s not always electronic devices that we’re talking about.

No. And so I mentioned that our son used seven different systems. Some of them had batteries, some of them plugged in and some of them we use tape to put on the, that was part of his executive function support that he actually used for others who came to the house to say, this is what I do, and then you’re going to help me do this, and then you’ll help me do that.

It was for him to help others know what he was going to do next. Cause. You got to follow the schedule when you’re in somebody else’s house. And there’s a lot of things people say. It could be a pencil grip. It could be a slant board, which is actually sometimes a three inch binder. There’s so many ways.

If you use a three inch binder, use a non slip, um, surface. So the paper does not fall off. There’s so many ways to look at it. That’s why having an assessment done, if needed. Um, is always a bonus.

Well and, as a parent of a child who didn’t need this, I’d recommend you parents that are listening. If it is mentioned, have the evaluation.

The worst case would be, they say, everything’s fine. You don’t need to make any changes. The best cases. You find a piece of a small little tool that you never thought of before that makes your child’s life easier and they’re able to continue learning. And, and sometimes it is, as you say, maybe it’s entertainment, but they have the right to be able to have downtime and enjoy themselves during that time.

Um, and you’re talking about the slant board. It could be as easy as having a slant board for a child who has a posture issue and now their toys are reachable for them. They’re not having to search for them. Um, things that we as parents may not think of. So I, I appreciate explaining that more.

Yeah, there’s so much. I, and there’s, there’s frameworks we can use and there’s observations and, oh, that’s so much fun. I, by the way, I’m never bored.

Well, creativity has got to be half of your job because every child’s going to be just a little bit different from the one before.

For sure, yes, there’s so many ways to do this for an individual. And again, that’s part of IEP is individualized education and. It’s so magnificent what we can do now, even for our son, people say, why did he need so many things? Well, he chose them. He told us what one more area that he needed, and it could have been when he was looking perplexed in a situation where like, I wonder if something more could be needed here.

I wonder if, and then we would try it and it would fill that need for him at that time in his life. And that’s what we would do. Stay curious. It’s beautiful.

So parents that are listening We, we, we’ve just listed a lot of different categories that you may hear about them in. If parents are feeling overwhelmed about the types of technology that are available, what resources would you recommend that they use to try to help them narrow down what they really should do or not? And I think your first answer is probably going to be listen to your child. But maybe not.

So listening to your child is one piece of it. I think crafting a really well put together IEP, because the goals come first. And then looking at, is there something we can put into place to help with an accommodation support, like through related services, that’s your different therapies in a school setting.

Is there something we can add to help create success for that goal? So if you have a reading or writing goal and you’re working on it and you’re like, is there something more that could help with this? If a child is using a Chromebook and it’s not quite working well, is there a setting under accessibility?

That’s called universal design for learning, and sometimes teachers are saying, well, I’m not quite sure about that. Is there an extension that could help with that? A lot of schools are using either a Chromebook or an iPad, or they’re on a desktop computer. A little bit less often on desktops now, but is there something after the goal is created?

And now how do we help this child find success? And that’s where the consideration process of assistive technology comes into play. And if things aren’t sure by that IEP team, then you can say, does anybody else have a resource that we can ask for them to come in and look at assistive technology? Now, in our state, like I said, every district.

In public education has access to one of our assistive technology teams. And if your state is a little different, you still have access to that consideration and, um, use of assistive technology, cause that’s under IDEA. That’s under the federal mandate. Now that comes through. The special education director or the LEA and asking the question of, I wonder if something more could be done with assistive technology.

And if you get a look of, huh, then is there a resource we can bring in to help us figure this out? There’s all sorts of resources. I love asking these kind of questions. There’s parent training initiative centers, sometimes called parent training centers that can help with these things. There’s many resources that are available, but asking about that.

Hey, let’s consider assistive technology. It’s actually under the five special factors. on each IEP that should be being looked at. And I say should, but it’s actually must as per Department of Education. I love Department of Education. So it’s actually one of those five, five special factors. Uh, I know now you’re all super curious because I love that part of the Difficulties with Disabilities Education Act.

That’s where you start, start with your goals and then Is there more that can help provide success for this student at this time?

I know, um, as I’ve talked to parents around the country, some, some of them are living in very remote areas and their school system may not have direct access. More than likely, it’s more a case where they’ve never had the question come up before.

And so parents, you’re listening. You just heard, you have permission to ask this question at the meeting, or even beforehand. Um, yeah, I recommend submitting your, your questions ahead of time so that the team can have time to, to answer them. Investigate a little bit and be ready when you come in and, um, and, you know, if you can approach it as a teamwork, then, then you’re going to have a better relationship to begin with.

But, um, but you may be the one that now teaches the entire school district and help the children that follow yours learn that this is a possibility.

It is really great when you can ask a question like that and they get their thinking caps on with you. It is. Doing it together that becomes powerful because everyone is there for the success of your student. They really are. They really are.

I want to transition now to our advice section here. So I have three questions for you about AAC devices and assistive technology that we’re going to try to pass on some advice with. And the first one is, The most significant way assistive technology has impacted the life of someone I know is…

The most significant way assistive technology has impacted the life of someone I know is. Through my son, of course, and when I think about assistive technology, that is the way that I think about how it gave him a way to say what he wanted, how to tell jokes, to decide who he wanted to talk to and when, and how much information he was going to give.

It also was how I saw that it impacted his life. And he decided when to say no and when he was finished, which are equally powerful for somebody to know how to do that for self advocacy and self worth. And that’s how I saw it be so impactful.

Okay, next one. When choosing assistive technology for a child, I always consider…

When choosing assistive technology. For a child, I always consider four things. I learned this through the team that I worked with, how they worked with our son, and through this same national presenter. Her name is Joy Zabala. She has a framework that’s called SETT. S E T T. Looking at a student, who they are, where they go, the environment they go to, the tasks or the goals they have in life, and then going to the tools or the things they’re going to use.

Those four things are how people, team members, Teachers always saw our son, it was him first. It was never a tool first. It was never the equipment or the system or the product or something. And then it was where he wanted to go. If he wanted to go tell the secretary something or his bus driver. And that’s what I do now.

Who are the people I’m working with? Who are these young children or young teenagers? That’s what I do still, those four things, and it’s that framework from a grand teacher in the universe, Joy Zabala.

And I like that, that you broke down student to, to the who first, because that’s, that’s the most important part. Okay. So the last one in this, we talked about this a little bit, but I think this is a good way to wrap it up beyond the technology itself. The key to unlocking the child’s potential is…

Beyond technology itself. The key to unlocking a child’s potential is to let the child lead, to let them show you what a preference.

Or a non preferences with a device, a system, a place where they are, where they want to go, how they’re going to interact with who or what is the key. They will and have and continue to be the advocate. That they know to be. If we will get out of their way and be still, that is the key.

Excellent. Great advice. You keep, you keep bringing it, and I appreciate that.

It’s I’ve seen it for 30 years in many, many situations. When we get in the way, then we’ve lost it. They know it and so will we.

And if we can teach them to speak early, then they’ll continue speaking. It’s, it’s when we kind of poo poo what they’re saying and keep pushing them aside that some of our kids will, will stop thinking they have a voice.

So, um, so I love, I love the way that you’re advocating for all and the voice can come in different ways. It may be electronic, it may be through sign, but you’re, you’re, you’re right. They have a voice and they, they, they know what they want to say if we’ll listen to them.

Yes, they do. Yes, they do.

All right. Tell us again how to find you, what projects you have going on. Um, I was excited when I heard about the second book coming up. So, so tell us about all these things again.

So people can find me on Facebook and Instagram. My website is juliapearce.Net. That’s P E A R C E. That’s how you can find me on my social media as well.

I’m also on LinkedIn. I, you can find my book on my website. The book is The Boy Who Became More Than We Could Imagine. The flow of assistive technology is almost everywhere in that book. It’s how we knew him. My next thing’s coming up. I do have a second one that I am writing about what comes next. People have asked me for that one.

It was always in the works. What comes next after a child is no longer here with us? And then I do have another project that I am working on supporting families of children who have passed away. their family members, their siblings. And that’s what I am doing now.

We’ll put the links for all of that in the show notes and on the webpage. So if you’re on the audio, you may have to go to the webpage to find it, but it will be linked everywhere. If you have questions about AAC devices, assistive technology, what you need to ask going in, Put your comments in there. Contact Julia directly. Send us an email to info@waterprairie.com. We’ll get the, the answer back to you.

So just reach out. That’s, um, we can’t answer you if you don’t ask. So, so leave your, leave your comments in your notes and we’ll, we will get, get that for you. So Julia, thank you for, for sharing all this. I, I even having. Children who are in the system, a child who had multiple technology evaluations. I learned a lot today. So thank you for sharing this with me.

It was so nice to be here with you. Thank you for letting me come.

I hope this conversation with Julia has provided valuable insights and resources for you. If you have a child with limited speech, remember you’re not alone in this journey. By sharing stories, information, and support, we can create a stronger community for families facing similar challenges.

If you found this episode helpful, please give it a thumbs up and subscribe to the Water Prairie YouTube channel for more informative content. Your support helps more families find these stories. And don’t forget to leave a review on the Apple podcast. Your feedback helps us improve and ensures we’re delivering the information you need most.

In the next episode, I’ll be speaking with Jay Silverman, a parent advocate and filmmaker. He’ll be discussing his experiences raising a child with limited speech and his new movie CAMERA starring Bo Bridges, which tells the story of a non speaking young boy. Thanks for joining me today and I’ll see you next week.