Perspectives on the AAC Journey: My Interview with Makayla, the Parent of an AAC User

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

reading time: 7 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 speaking with Makayla, the parent of Brantley, an AAC user. We talked about their family’s AAC journey, the impact of AAC on their family, and Makayla’s perspective on where they started. We also talked about where they are now and her recommendations to other parents at the beginning of their AAC path.

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

Me: What type of AAC does Brantley use and how long has he been using it for?

Makayla: He uses a Forbes AAC device [a ProSlate 10D] with TouchChat. He’s used one [an AAC device] in school for about 2 years. But at home, it’s been not yet a year since we got one [his personal AAC device].

Me: So, think back to that time – What did you think about the initial stages of the AAC evaluation and trialing process?

Makayla: I thought it was really organized. We got in pretty quickly to see you, the therapist. It wasn’t a very long wait time. We got answers quickly. I felt comfortable with the process. There was some wait time, of course, but it wasn’t unreasonable.

Me: Tell me about the earliest stages of your AAC journey. What were your earliest conceptions, thoughts, or difficulties? How did he respond to AAC upon obtaining his device in those early days or weeks?

Makalya: He responded pretty well, like I said, because he already had some familiarity with it because he had one at school. Honestly, it was a new thing for Eryn [Makayla’s partner] and I. It was definitely difficult to remember to grab it for everything, rather than doing whatever was the routine before. For instance, if he wanted a snack, it was hard remembering to use it, rather than him just going and getting a snack. Remembering to grab the device was hard. And not just continue with whatever routine we’d already set. Now he goes to his device when he wants something. But because he had had one at school, he seemed to grasp using it more at home. He does seem to grasp the concept of new things pretty quickly. Sometimes he needs prompts to really establish patterns. But I think he grasped the concept of expectations and routines [using the device] pretty quickly, even though I don’t know if it takes other kids more time or less time to grasp it.  Eryn and I both agreed that we felt comfortable that it was in a timely manner.

Me: You’ve kind of touched on this a little bit. But tell me more about how AAC has impacted Brantley’s development and your family dynamics. Where are you now in the AAC journey?

Makayla: It’s helped a lot! He’ll now tell us exactly what he wants to eat. Before we’d know he was hungry, cause it’s lunchtime or it’s snack time, and we’d be offering all these things. But now, he’s got eating and drinking down really well. He does ask us to use the bathroom. I’d say we’re about 30% potty trained. He’ll grab a pull-up, and he’ll say “go” on his device because he wants to go to the bathroom. He hasn’t quite found “bathroom” yet. So, it’s helps with that. It helps us know that he wants to go to the bathroom. It helps us know exactly what he wants to eat. You can see that he’s not as frustrated. And it helps us not be as frustrated because he’s getting what he wants. He’s communicating, and that’s essentially what the goal is. It helps with pinpointing what his needs are and exactly what he wants, as well as helping with the challenges of being nonverbal. It’s helping him be a fully productive citizen in his way. He has had quite a few dry pull-up days at school recently because he is asking to go to the bathroom. He asks to go to the bathroom a different way at home than at school. So, I am trying to line it up so it’s the same, but at the same time, I don’t want to ruin it. So, do I let him have his different way? If he’s doing it, he’s doing it, I don’t want to mess it up.

Me: It’s kind of like code-switching. People who are bilingual – they code-switch. They communicate in one way in one community setting and in another way in another community setting. If you think about it like that, it’s like, I’m comfortable communicating this way when I’m at school, and I’m comfortable communicating this way when I’m at home.

Makayla: That’s a good thought. I didn’t think about it that way.

Me: It also honors all of the different ways that he can express himself.

Makayla: That’s why I didn’t want to change it! Because he is telling us in some way, and it is with his device. So that’s why I’m like, he’s still asking, he’s still voicing it.

Me: Yeah, he doesn’t have to do it the same way as school. You could still respond by modeling the way that school is doing it, but without insisting that he has to say it that way too.

Makayla: Yeah, that’s what we also talk about at conferences. What are you guys doing on his AAC so that we can do it at home?

Me: Cool! Okay. Tell me about programming and customizing your child’s AAC system. What has that been like?

Makayla: Setting it up was very overwhelming. I actually had an appointment with his therapist at school for help to set it up. And I had to completely start from scratch at least four times. Because, at first, I thought I had to edit all the buttons to be things he liked or things he was doing at the time. Then it clicked, he’s doing these things at this time, but he could move on and do these things that I might be changing or deleting. So, I kept going in and resetting it. So now, I’ve just left everything and I just add or modify what we do. Once I was shown how to edit, to upload pictures, and other quick little things – now it’s pretty easy. But the initial process was definitely a little difficult. It was helpful getting instructions from the [school] speech therapist. So I think once kids get new devices I definitely recommend having someone help you get it set up, even if it’s through a Zoom call. Because even looking at just the FAQ page, it was very confusing. And it helps to search for things with the first few letters.

Me: Yeah, it can be confusing if you’re not as familiar with it.

Makayla: And yeah, I think it was you, at the AAC Social & Support Group, that showed me how to search for words by the first few letters (of what we’re looking for). And that has helped a lot, too.

Me: What have been barriers in your or your child’s AAC learning journey? How did you overcome them or what ideas do you have to continue working toward progressing through these barriers?

Makayla: I would say some of it is – there are just too many buttons to push to find some of things. Sometimes, we’re trying to figure out what Brantley wants, and he knows what he wants, and he’s trying to find where it’s at, but he can’t. And then we don’t know how to show him where it’s at because we don’t know what it is. It might be too many steps to navigate to what he wants. He’s trying to tell me what he wants, and I can’t figure it out because I don’t know. Sometimes it’s a process of elimination. But otherwise, as far as its usage, charging it, and daily use, it’s been pretty smooth.

Me: What would you recommend to other parents of non-speaking children who have not yet started their AAC journey or might be feeling hesitant?

Makayla: That’s a hard but easy question. I have a friend whose child just got diagnosed [autistic] and he’s 3. She’s asking, Where do I go now? What do I do now? My advice is: Don’t be afraid to ask. If you think AAC is right, then ask. There are no stupid questions. Don’t be afraid to ask questions. Do it. It’s scary and it’s overwhelming, but it’s so rewarding. And if it doesn’t work, it doesn’t work. We were nervous, too. But I’m glad we did it. It definitely fits for him. It’s the times. Technology. Don’t hold back and just do it. I’d rather it have not worked and have tried it. What we like to say in our house is “process of elimination.” Sometimes we’ll just open a page that may have what he wants to say and he’ll push something.

Me: Thanks for sharing! Is there anything that I didn’t ask you about that you want to add?

Makalya: Technology is everywhere. It’s easy to edit and customize it. I hated always having to laminate and make the PECS pictures. It was more challenging because if he liked something new, he couldn’t communicate about it, because I had to make a new picture for him. I’m very grateful. Things are accessible. There are resources out there that can help you get what you need for your child.

As you may be able to glean from the interview, Makayla, Brantley, and I worked together during the AAC evaluation and trialing process. Everyone’s AAC story is different and unique. Thank you, Makayla, 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!