by Molly Menzie, MS, SLP (speech-language pathologist); NWACS board member

reading time: 12 minutes

The views expressed in this post are those of the author and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied regarding any device, manufacturer, resource, or strategy mentioned.

I recently had the pleasure of connecting with Ben, the parent of Dante, an AAC user. We talked about their family’s AAC journey, the impact of AAC on their family, Ben’s perspective on where they started, where they are now, and his recommendations to other parents at the beginning of their AAC path. We even get sidetracked talking about literacy skills and tools!

Here’s our interview (edited to be more clear and brief):

Me: What is Dante using for AAC and how long has he been using it for?

Ben: Dante is using an iPad mini with TouchChat. He was using LAMP Words for Life. Everyone but me was pushing to go to TouchChat, and I got overruled. I wanted to stick with LAMP, but we’ve moved on and that’s okay. It seems to be working okay, and he’s still using it. It’s nice to see how well he’s using it and be specific with what he wants and needs. He’s been using AAC since 2020 when he was in preschool.

Me: I want you to think back to 2020. What did you think about the initial stages of the AAC evaluation and trialing process?

Ben: At the time I was okay with it. I looked at you as the expert and leaned on you to pick what you thought was best. I was definitely okay with that. But I do wish I had tried other ones, just to see what they were like. In all likelihood, I probably would have settled with what you suggested. I feel like letting him have a chance at using one of the other ones to see if he was more drawn to one of the other ones. But I don’t know.

Me: Do you remember that we did try some other ones?

Ben: I only remember having the test one, with LAMP. Did we do some others in the office?

Me: Yeah, in the office we tried a couple of other ones. I think the reason we did the home trial with LAMP is because that was the one he was most successful with at that time.

Ben: I definitely remember using the trial one for LAMP, and I feel like I can’t remember if we trialed one other one. If there were more we did in the office, it obviously didn’t stick in my brain.

Me: It was probably a very overwhelming and busy time for you.

Ben: Yeah, just with school and ABA and speech, and getting him to pre-k. It was pretty busy. It was definitely a weird time with COVID and all that. That whole time period is just a blur.

Me: So now, sticking with this theme of thinking about the earliest stages of the AAC journey, what were your earliest conceptions, thoughts, or difficulties? How did he respond to getting his device in those early times?

Ben: For me, I felt ‘this is weird to me, and I don’t understand how to use this.’ You know, because of the way LAMP was. For someone who already knows how to speak, it’s a very weird system to look at and try to figure out how it’s structured. Some of the buttons didn’t make sense or the icons didn’t make sense. And I didn’t know how well it was working for him or how well he understood it. I didn’t know if the icons made sense to him because he doesn’t talk. Even today he doesn’t tell us what he doesn’t like. He’ll tell us if something’s outright bothering him, he’ll let you know if something’s like that. He just may not do it. And back then, was it because he didn’t understand? Or he just didn’t want to do it? That was my earliest initial impression – that it was odd to me because some of it didn’t make sense to me.

Me: I can understand that. Tell me about how AAC has impacted Dante’s development and your family dynamics, and where you are now in your AAC journey.

Ben: He’s gotten to where he is always willing to tell us what he wants if it’s something of high value to him. [Like] his iPad, when he wants us to do a puzzle with him, wants food, or wants to go outside and play with him. It’s nice that he can grow into that and communicate those things. I definitely feel like we can try to use it more, to keep him realizing that he can use it to communicate. It’s always like ‘Oh yeah, I should grab this and communicate with you and show you how to use it more’. That’s always the struggle with us as parents. Right now, he’s in school. They use it in school. The Edmonds School District uses TouchChat, so that’s what we ended up moving on to. The ease of customization with TouchChat has been a big winner to get the items that we use more frequently within the house, his life, and at school. So that’s been good.

Me: Yeah, I like TouchChat, it’s one of my favorites. But each system has their things that work for each person. So, you started to go into programming and customizing. What have you enjoyed with it? What has that been like? You’ve started to put some of his favorite things in there, right?

Ben: Yeah, we did some of that with LAMP, right? But I feel like the customization with LAMP was a little more clunky. Making those extra pages and getting deeper into it was a little more clunky than we would have liked with trying to set it up. And if it was harder to get to then he wouldn’t want to navigate or use it. Unless it was of high value, and then he would have no problem going 3 or 4 pages deep to get to it and find exactly what he wanted. He was definitely able to do it, it was just whether he wanted to. With TouchChat, the customization is easier. We’ve put in some of the key phrases from his YouTube songs as a way for him to be able to say, “Hey, I want to go outside and put on my shoes and my hat” and so that works for us.

Me: What have been barriers in your learning journey or Dante’s AAC learning journey? And, what do you feel like you’ve done to overcome them, or what ideas do you have to keep on working toward progressing those?

Ben: The biggest barrier has just been time. Making time available to use it. I remember that we should be using it 200 times a day or something like that. In the initial days, I could do that. I wasn’t working. I could be with him more and work with him. But now both parents are working and it’s hard to find the time to be able to focus more on that. Plus, when he gets home from school, that’s the last thing he wants to do - be sitting at his desk here and working on it. And that’s why the speech therapy fell off to begin with. I started going back to work and I couldn’t take him anymore. And even, we’d be doing it after school, but by the end of the day he's just done and doesn’t want to do any kind of work like that. Who can blame him? It’s the end of the day and he just wants to chill out, and that’s fair. I totally get that. But now, how do we still use it to teach him to communicate? So now it’s about trying to find those moments when he’s already doing something and I can come over and narrate with AAC, and things like that. We’re still trying to remember, even when he wants water, and going over to him and saying with his device ‘It looks like you want water.’ It’s still tough for us to remember we should be trying to communicate more to him with it. That’s really our major barrier - the time. And I want to be able to get him back into speech therapy. But again, when’s a good time with both parents working again? It’s hard to figure out what would be best. Especially with him only getting 30 minutes to an hour of speech therapy in school, and he’s with other kids. It’s still challenging to figure out what’s best. But I will say this - he is spelling words. Words that are totally from his YouTube songs. But it’s funny because he’s spelling them from the end of the word and works his way to the front. You can see him start to put letters together and you’re like ‘What are you doing? That doesn’t look like a word?’ and then next thing you know it’s octopus and you’re like ‘Oh okay, my mistake.’

Me: That’s really cool though, that he’s figured out how to put letters together to spell words. How is he doing it? Is he doing it with his device, is he writing, is he typing?

Ben: We have some little letters made out of wood or plastic that he has on his table.

Me: So, he’ll just arrange them?

Ben: Yeah, he’ll just start doing like ‘helicopter’ or ‘rhinoceros’ and I’ll be like ‘I didn’t teach you that.’

Me: Those are big words!

Ben: Right, exactly. He’ll just sit there and be putting letters together and I’ll be like ‘opus, oh like magnum opus’ just being funny. Then he’ll add the ‘c’ and ‘t’ and I’ll be like that doesn’t look like a word. Then he’ll add the ‘o’ and I’ll be like ‘Oh, my mistake. You clearly know what you’re doing. Let me get out of your way!’

Me: That’s so cool! So, is he just putting the letters in order from right to left?

Ben: Not entirely. He’ll start at the end and put the letters together and might start right to left, and then he sees ‘Oh this is a letter that goes in front of this letter that I put down’ and he’ll move it around.

Me: So he recognizes if a letter is not in the correct location?

Ben: Yeah, he’ll notice that, and he’ll move it. It would be nice if there were a way that he could spell a word out of order on an iPad or a talking device or something like that and it be able to put the word together in order and see it come together. There are some apps where you drag the letters to the spot they’re supposed to be in, but that’s not the same as him spelling it himself. It’s got the outline there, he’s just got to match it.

Me: Yeah, it’s a matching skill, not a spelling skill. There is some good information out there on the NWACS website on the science of reading and the science of writing, and using alternative pencils. An alternative pencil doesn’t sound intuitive. What is an alternative pencil? It’s really anything that allows a user to have access to the 26 letters of the alphabet. So for instance, him using these little wooden letters, that’s an alternative pencil right there. He is probably a really great candidate for working on spelling to communicate. Starting to teach him ‘How do I transfer this arranging of physical letters to maybe typing on a keyboard or using a stylus?’ or something like that, to be able to more spontaneously put together novel words to express himself.

Ben: Yeah, seeing if he could use a stylus - if he could use that to write a letter. His writing is obviously not that great. I don’t even know if he wants to do it.

Me: Which is why maybe using a keyboard would be a better idea for him.

Ben: I wonder if he would draw it with his finger.

Me: Yeah. I don’t know if you’ve found it yet, but there is a whiteboard within TouchChat. It’s in the Art folder within Groups. That could be a cool spot to explore that writing type of skill.

Ben: When we were still using LAMP primarily, he would pull up the phonetic keyboard and start pressing letters to hear the sound. I could tell he had a couple of letters that were his favorite sounds, like ‘l’ and ‘m’ and ‘a.’ It’d be nice to see how he’d do. I’ll find that whiteboard!

Me: If you can find a way to keep spelling motivating, it can be a really supportive way to keep their communication and literacy skills developing.

Ben: I still try to read to him, but he just takes the books from me to flip through the pages.

Me: They have websites that do read-alouds, like Epic. They have a bunch of different books, but it plays it like a video. It’s a static picture of a book, and someone reads it aloud, and then the page turns. It’s just a book but on a screen. There’s another one called Monarch Reader. I don’t think it speaks aloud. I think you have to read it aloud. But it’s on a screen. You can also create your own books. So those may be some other ways of reading to see if he’s interested when it’s not a physical book.

Ben: Yeah, those are good.

Me: Okay. So, what would you recommend to other parents of non-speaking children who have not yet started their AAC journey or might be like ‘I don’t know if I want to take this on?’

Ben: I would say, ‘Don’t hesitate.’ I definitely feel like we waited longer than was necessary. It was a busy time and there was a lot going on. Maybe we could have started his speech therapy journey sooner. Maybe we’d be further along. I don’t know. It’s hard to know. I would definitely say, ‘Don’t wait, get out there.’ Maybe you can find something that will work for your child. You never know until you try it. Even though the first steps can feel hard, like ‘Oh, is this working? Is it worth it? Is it what’s best?’ I still say it’s worth going for it. When it starts clicking and they’re able to tell you that they want something, that’s so amazing and awesome for that to happen.

Me: Any other last comments? Anything else that you wanted to bring up that I didn’t ask about?

Ben: I know it sounds like the cost can be a barrier to people. That definitely seemed like a barrier to me. When you look at what these things cost when you buy them directly from the people who make them. It’s one of those things - where ‘You’re telling me that this iPad and an app, that sure you might charge a couple hundred bucks for – for the app - but the cost of the whole thing was like 5 grand?’ For a Bluetooth speaker connected to this, that just seemed incredibly outrageous. And to struggle to get it through insurance, and to have to have those fights with them about whether it was necessary. It’s ridiculous that that’s the way it is. That can definitely be a barrier. It was hard for us to get it all worked out. Someone might see that and think ‘We just can’t do that, it’s too expensive.’ Or they may not have insurance that can cover that much of it. That can be a huge barrier. Fortunately, if I had to buy it outright, I could buy it outright. But not everyone has that available to them all the time. It was definitely a problem at the time.

 

As you may be able to glean from the interview, Ben, Dante, and I worked together during the AAC evaluation and trialing process (as well as for some follow-up therapy) several years ago. It’s wonderful to hear that they are still moving forward on their journey. As SLPs, we support families in making the best decision that supports the AAC user at that moment in time. In this story, Dante’s AAC system changed along the way. This does not suggest that his original system (LAMP Words for Life) was “wrong” nor that his current system (TouchChat) is “better.” It simply reflects that sometimes people can communicate effectively with more than “one right system.” As an AAC user grows and is exposed to different environments, people, and teaching tools, the team (which includes the AAC user, parents, SLPs, teachers, etc.) may determine that a different system may be a better choice when all factors are considered.

Thank you, Ben, so much for sharing your perspective, lessons, wins, and barriers with the NWACS community. We are so grateful to you for sharing your story!

If you are the parent of an AAC user, or you are an AAC user, and you’d like to share your story, please reach out to us. We would be happy to boost your narrative!