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

reading time: 6 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 Alejandra, the parent of Nayeli, an AAC user. We talked about their family’s AAC journey and the impact of AAC on their family. We also talked about Alejandra’s perspective on where they started, 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, and translated from Spanish to English):

Me: What type of AAC does Nayeli use and how long has she been using it?

Alejandra: I think it’s Saltillo*. And that is a good question. It seems to me that she has had it since she was 5 years old. We got funding for it through Ben’s Fund.

*Nayeli’s device is an iPad mini with TouchChat with WordPower 60 basic SS (created by PRC-Saltillo)

Me: What did you think about the initial stages of the AAC evaluation and trialing process?

Alejandra: I was very interested in trialing something different. I wanted to know about another type of communication, another alternative. We had tried using sign language, very basic sign language, and I wanted to see if there were other ways to help my daughter, Nayeli, communicate. I was very interested at this point. And I was thinking, “What other things are there?” You know? The initial parts of this – well for one, her interest was very low. She knew that it was a tablet, and used tablets to play, but didn’t understand immediately that it was just for communication. She thought, “If it’s not a game, it doesn’t interest me.” It was a process of little by little. There were good ideas and bad ideas to help her use it, but sometimes she was like, “I don’t want to use it,” both at home and at school. In school, they also said, “She doesn’t want to use it.” We had to introduce pauses, both at school and home, and move slowly through it.

Me: You touched on this a little bit already, but tell me more about the earliest stages of your AAC journey. What were your earliest conceptions, thoughts, or difficulties? How did your child respond to AAC upon obtaining her device in those early days, weeks, or months?

Alejandra: Nayeli was familiar with electronic devices that she could use to play games and watch videos. But to use it exclusively for communication? It was hard… it was hard. And for me to learn… you gave us a basic vocabulary*… to use at home. And she refused. I would say “look,” and use it not during play, but to model “I want to eat” to try to motivate her and grab her interest. She would look and she would touch it. She started to just explore it. And we played with it using, “I want to eat,” or “I want __.” I felt like it was a stage, I let her explore. Then later, I would model. I tried hand-over-hand, but she didn’t like that. Her sister would try to model and tell her what to say on the device, “you have to say ‘I,’ you have to say ‘want,’” to try to support her. I can’t do everything, so I showed my husband and her sisters how to use it, too.

*Nayeli started out with WordPower 48 basic SS with some masking

Me: Tell me about how AAC has impacted Nayeli’s development and your family dynamics. Where are you now in the AAC journey?

Alejandra: I’m going to answer the last question, where we are with her AAC device – we have it as a mode of support. Recently, she is using more spoken vocabulary, but just simple individual words. That’s how it is. Sometimes she uses 2-3 words – it’s changing. Recently, she has started using some phrases. So, the AAC device is a mode of support. The question of how it has affected us – I have tried to support my daughter in whatever manner of communication she chooses. Because it’s important to me that she communicates in the way that she chooses. So, we continue to use the device as a mode of support. If she wants to expand more on her comments or if someone doesn’t understand her, we can use it. It’s good for that. When she finds that she is not understood when communicating with other people, she can use her device, so she can say, “I want…” or “I need help.”

Me: Now, let’s talk about programming and customizing her device. What has that been like?

Alejandra: I haven’t made many changes to the device. But it’s been important in therapy. This is like the third time that we have added to her vocabulary*. I feel like it’s easy, to add a letter or word to the vocabulary. It’s not complicated. It’s easy to program.

*Nayeli started with WordPower 48 SS with masking, then used WordPower 48 SS without masking, and now uses WordPower 60 basic SS (without masking).

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

Alejandra: For me as a mom, it has been the consistency of utilizing it during the day. The consistency to fit it in – I am a mom of 3 girls. I have to tell you, sometimes as a mom taking care of three children, it’s a lot to do. I’m always going in many directions at the same time! So that’s what’s been hard – finding the small moments to use it, support her, and work with her. And that they all use it, both at home and in school. I’m not at school, I can’t control what services they give her at school. I don’t know what percentage they are using it, how much they are supporting her. It’s in her IEP, but, I don’t know if it’s 100% of the time, 0% of the time, or 90% of the time. I have to advocate for her, that they use it in school. The other thing I can improve on is to use it in moments when she is ready to work with me in small pieces during the day. And it’s been hard for her to know that this is a device for communication, it’s not a device for playing.

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?

Alejandra: Look, for one, if you have one [an AAC device] and you feel that it’s failing and something isn’t working as you’re doing it yourselves. Something needs to be reworked. You can’t introduce an AAC device in one hour. Start in small pieces, when the child wants to cooperate. If you force it, they will fight and cry. You can do it in small amounts and increase from there. Then you see, “yes, it helps.” And no communication is bad. It’s about talking. We can use verbal language, sign language, and language via AAC. We can try everything. All that matters is communicating. For people just starting out, try it.

As you may be able to glean from the interview, Alejandra, Nayeli, and I worked together during the AAC evaluation and trialing process as well as for follow-up therapy. Everyone’s AAC story is different and unique. In this story, the family has found that Nayeli is showing improvements in her spoken language, which is wonderful! Her device is a support to augment her language.

Thank you, Alejandra, 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!