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 connecting with Bradley, the parent of Brayden, a new AAC user. Brayden currently has a trial AAC device, namely the Via Pro with TouchChat with WordPower 60 basic SS from PRC-Saltillo. They are currently in the funding process to get Brayden his own personal device. We talked about their family’s introduction to AAC and the impact of access to AAC on Brayden’s communication and their family dynamics. We also talked about the successes and challenges, the family’s hopes for the future, and Bradley’s recommendations to other parents at the beginning of their AAC path.
Here is our interview (edited to be more clear and brief):
Me: You guys, as parents, and Brayden are kind of at the beginning of your AAC journey. Even though I know what’s going on, our readers don’t, so where are you currently in your AAC journey? And how do you feel about the initial evaluation and trialing process so far?
Bradley: It’s been a couple of months since he’s been using the [trial] AAC device. It’s been very useful for us as parents, ‘cause we get to understand how our son, Brayden, feels. He can tell us if he’s hurt or what he wants to eat. And he’s learning. Even though it seems like he’s pressing the buttons repetitively. To some people it may seem annoying or like it’s a sign of autism. But actually, it’s him trying to learn words himself, navigating through it. Just watching him navigate through, how to find the words himself, it’s very amazing. You can see he knows what he’s pressing. And there are other times when he’s still trying to learn what this word means. I think it’s been very useful for us as parents. And to future parents who might use this device, who want to give it a shot – it’s still his voice. It’s a computer, yeah, but it’s still him saying what he wants and feels. So it’s very useful for us.
Me: You’ve talked about this a little bit. But can you elaborate on what’s been going well for you on your AAC journey so far?
Bradley: What’s going well is that we can actually communicate using the device itself, such as showing him actions. His tantrums and frustrations have really lessened ever since he found out he can express how he feels. Before the device, he was pretty much yelling and trying to show us what he wanted. It was hard to clearly understand what he was trying to say. But now that he has it, it’s helped him a lot with his emotions. Less yelling, less tantrums. Like hey, let’s play. And he’s starting to babble again. So that’s really a plus for us.
Me: What has been challenging for you guys as parents, or for Brayden, during this AAC process?
Bradley: The challenge is still just him trying to figure out each word, right? This is a trial device, so we can’t necessarily choose certain words that we want in the moment. But him just figuring out how to use those words, like animals, has been helpful. But that’s truly the hardest part at the same time. He can press it over and over. Once he learns it, it’s there. He doesn’t say it, but once he says let’s talk, it excites him, and that felt like a breakthrough for us.
Me: Tell me about how AAC has impacted his overall development and your family dynamics.
Bradley: I think that it has helped a lot. Before, he was more to himself or to us as his parents. But now we have both sides of grandparents (mom and dad’s side) here, and he’s more interactive with them. When he wants to talk to them, our parents themselves actually speak to him with his device. So, he’ll go to one of his grandparents, grab his device, and he’ll say “eat” or “pizza.” For us, that’s something big compared to where we were with just trying to figure out what does he want. At the same time, he still does make his own choices. You can ask him. You can still make him pick. But instead of you saying the words yourself, he can choose the words himself on his device, like pizza or chicken nuggets. He’ll find the word he wants, and he’ll select what he needs. I guess it’s helped that he can say it with his own voice. He’s more social and more patient with us. I think he actually realized that the AAC is a way for him to make a choice and to make a conversation or connection with the people around him.
Me: That’s great! What do you think things will look like in the next 6 months to a year for you and Brayden with respect to AAC and language?
Bradley: The next 6 months to a year... Well, the problem right now, the trial is about to end this month. So we’re waiting to see if we’ll get it. We’ll see if the AAC device will help him figure out what he wants to say. And maybe we’ll see if the device will help him be more verbal. That’s where we are with the device right now.
Me: What do you think his communication would look like if he didn’t have access to AAC right now?
Bradley: I feel like if he didn’t have access, it would be the same as before. Tantrums and trying to figure out what he wants, what he wants to say, and how he feels. You know, as parents it’s very frustrating. We want to do our best to figure out, even – Is he verbal or nonverbal? You’re always gonna be there. But, at the same time, it’s really hard. It’s like playing a guessing game sometimes but it’s what you have to do. And sometimes it could be 0 out of 100 until you get it right. With this device it has made it much easier, so we have at least a 70% chance of figuring out what he feels. Hopefully, when we get our own device, it will be more helpful for him. So we can actually make it so he can say what he wants and likes, and not just the testing stage of the device we have.
Me: So essentially, you’ll be able to customize it and incorporate more vocabulary that is personal to him to support his communication.
Bradley: Yes. Especially the phonics section has been really helpful to him. He’s trying to pronounce it. You know, like with ‘B,’ he’ll go ‘buh,’ so it’s almost there. For us as parents, it’s very much a proud moment. And now he knows how to laugh and express himself in his own way other than just using the device.
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?
Bradley: I would say to parents, ‘before you say no, try it out, there is that trial period.’ It is a waiting game, with insurance, you know. But at the end of the day, it’s very helpful. Your child could keep pressing that word and keep hearing it repetitively and they’ll actually understand. For parents who are thinking they want to do it, give it a shot. Don’t let it feel like it’s not your child’s voice. It is their voice. It is their feelings. They’re just trying to communicate better with you. Even though it is a computer-sounding voice, it is still their emotions and their feelings that they’re trying to convey as your child.
Me: Aw, I love that. That’s awesome. Is there anything that I didn’t ask about that you want to share with the readers of the NWACS blog about your experience so far?
Bradley: Yeah. I guess that with the experience we’ve had, if we talk to him, we say, “grab your talker,” and he knows exactly what he’s grabbing. He can differentiate between his iPad that he watches Netflix on and having a personal device that he can actually speak with. What’s fun, is that he actually carries it around. Or we ask him to grab it, so he can explain what he wants, and he knows. And Brayden’s progress in the last 3 months, from just hearing us talk and the media that he hears around him, it has been night and day. It’s not just the babbling and screaming, even if it’s nice to hear his voice again. It’s more about understanding how he feels and what he wants to talk about. Having a first kid and not knowing what help you have out there – this [AAC experience] has been the most helpful for us.
As you may be able to tell, Bradley, Brayden, and I are currently working together. We are hoping that their insurance approves the funding submission and that the out-of-pocket cost isn’t too high (!). However, there are other resources available that we can take advantage of if Bradley and his wife feel that they can’t afford the parent responsibility portion. There are several different ways to fund a device!
Thank you, Bradley, for taking the time to share your story and experiences with the NWACS community! I hope that hearing the beginning stages of this family’s AAC journey will encourage other families to get started on their own.
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!
