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Okay, I might be exaggerating a bit. As someone in the field, I know what an augmentative communication device is, but wow—there’s so much to explore! From brands and sizes to displays and colors, the choices are overwhelming. And then there’s the learning curve for using the device itself. I can’t imagine how parents and families who aren’t familiar with these devices manage.

When Boy1 started speech therapy at school, and before we could begin private speech therapy, we had to decide on the best way for him to communicate. While we hope he will eventually speak, as this will be the most practical long-term, we needed a solution for immediate communication. We considered sign language, but as with any language, if others don’t understand it, it’s not very useful. That’s the challenge Boy1 faces now—he knows what he wants to say but struggles to bridge the language barrier.

We opted for a communication device because it seemed the quickest way for him to learn effectively. Kids today are so adept with tablets; they find them engaging and fun. Initially, it took some time for Boy1 to get used to the device, but now he’s using it frequently and confidently.

There are concerns that using a communication device might hinder verbal speech, but that’s not the case for Boy1. He’s actively trying to mimic the words he hears from the device, and as he uses it to make requests and answer questions, his verbal skills are improving.

The device operates like a grid, with icons representing words or categories. Boy1 can use it to express his needs, such as what he ate for lunch or what he wants for dinner, and even spell new words or ask and answer social questions. It’s incredible to see how much he’s learning and communicating.

Boy1 works on school-related communication and language with his speech therapist at school, who is absolutely amazing. He also focuses on functional, social, and exploratory skills with his private speech therapist. The combination of structured therapy and his own exploration with the device has been transformative.

Acquiring the device wasn’t straightforward. We had a 30-day trial last spring to determine if it was a good fit. We needed referrals and prescriptions from his pediatrician and speech therapist, and then encountered delays over the summer due to his adoption and insurance updates. He started the school year without a device, which led to some challenging behaviors due to his inability to communicate.

Desperate for a solution, I reached out to the company and pleaded for any available device to bridge the gap. Although I offered to pay out of pocket, the company couldn’t accept private payments due to Medicaid regulations. Finally, recognizing his urgent need, they provided a loaner device until his permanent one was approved. The permanent device will be similar, so he won’t have to relearn how to use it.

This experience has been incredibly humbling. As a healthcare provider, being on the consumer side of things has shown me the significant challenges involved. It makes me empathize deeply with parents and caregivers navigating this system without insider knowledge. By sharing our journey, I hope to offer support and insight to others facing similar challenges.

A few additions for Boy1’s permanent device:

Names of Therapists and Teachers: To assist him in talking about his support network.

Lost and Found: For when he misplaces jackets and water bottles and needs to communicate that he needs to visit the lost and found.

Family Names: To help him identify and communicate about his family members.

Featured image courtesy of Deposit Photos artist jemastock.