Making strides: Aiden’s communication journey

Interview with Angela, Aiden’s mom, who talks about CVI and Childhood Apraxia of Speech (CAS) and the road to Aiden's progress.

Aiden sits on the carpet with his AAC device next to his sister while playing uno.

Aiden is a fun-loving and hard-working kid who has CVI and Childhood Apraxia of Speech (CAS). He’s making great strides in his speech and language skills. Angela, Aiden’s mom, is doing a lot to figure out how to help Aiden make progress and live his best life.  

Describe Aiden’s communication journey.

Aiden has made great strides in his speech and language over the years, including his articulation, expressive and receptive language, oral motor and feeding, and social skills. He was diagnosed with Childhood Apraxia of Speech (CAS) early on at around age two by his Infant/Toddler SLP. He’s also been diagnosed with dysarthria—a motor speech disorder. He continues to work on articulation and increasing his mean length of utterances (MLU) to make his speech more intelligible to others, especially his peers.  

What approaches does Aiden’s Speech and Language Pathologist (SLP) use to support his total communication needs?

I sent this question to Aiden’s private speech therapist. Here are the SLP’s answers:

Go Aiden. Working hard! Right now, where are Aiden’s strengths with using his speech?

Aiden loves music—it’s very motivating for him. He will replay a song multiple times to learn it by memory and by the end our whole family knows the song and can sing along too! He loves singing songs from his favorite movies and shows. Here’s Aiden singing “Hey Jessie.” https://www.youtube.com/embed/a1TWCOmzzzc

How does Aiden use his AAC? And how are you incorporating CVI considerations?

Aiden previously used the NovaChat 10 as his AAC device. He learned to use it before it was adapted appropriately for his CVI. The positive is that he has a phenomenal memory and was able to navigate his device really well through memory and motor planning. However, he didn’t learn a lot of new responses or expand on sentences. We’ve continued to work to make Aiden’s device better match his unique vision needs and consequently I ended up making changes myself after hearing a couple of Chris Russell’s presentations on AAC.  

During COVID, we started using his device as a teaching tool to assist with his learning. We also incorporated it into his free time including games with his sister. Within the past 3 months, Aiden got a school-owned device. It is the WordPower 42 Basic SS and is a program on the iPad. It’s been more difficult for him to navigate due to unfamiliarity with the device—for example, finding the items on each screen, understanding the symbolstix, motor planning through the device—so it’s been a slow transition.  

Aiden sits on the living room floor while playing the game, Guess Who. He uses his AAC device to communicate during the game.

It’s difficult to simplify Aiden’s AAC device because it’s a 42 tab grid frame. We increased to 42 because his language was expanding and we want to offer more options. However, visually, as you can imagine, it can look overwhelming. The primary changes I made were blacking out to reduce clutter, including real photographs, and adding color strategically to words and numbers (for example, Roman’s bubbling technique). It is still too visually cluttered and I’d like to see more use of words and get rid of the symbolstix. However, it’s a gradual process of trial and error to understand how best to adapt the device to make it appropriate for him.

Aiden uses his device primarily in quieter environments. The most I see him use the device willingly is when he’ll pick it up (we just leave it out in our home or bring it with us in the car). He starts making sentences and asking me to respond to his questions about people, places, and time listed on his device. Then we have an informal mini session until he’s done with it and moves on. I try not to push him but want to offer opportunities for him to have access to it and “play” around with it when he’s ready.

Image of Aiden's AAC device with a black background and three rows of items to help him communicate who he is.
How does Aiden use his verbal communication?

We continue to work on his verbal progress. He primarily uses verbal responses, but we use the AAC device for clarification or as a teaching tool. It’s been difficult to use with peers as they move so quickly and don’t wait for his response using the device. It’s a constant work in progress on how best to use his verbal language with aided use of his device to maximize his ability to be heard and included.  

Aiden prefers verbal communication, which makes it difficult in conversations with peers. Adults who know him know his speech and can infer what he’s saying. Peers are more difficult but he’s getting better.  When at home, my husband and I are never too far from him and can help him with peers as needed. We try to not be helicopter parents and give Aiden and the peer time to figure the barrier out themselves, but it’s hard not to just jump in. With that being said, Aiden does have some wonderful friendships. These friends give him time to respond and just somehow work out the communication barrier among themselves. It’s so awesome to watch them together!

It’s a constant work in progress on how best to use his verbal language with aided use of his device to maximize his ability to be heard and included.  

What are some specific supports that are helping him on his literacy journey?

We use a lot of different and multisensory approaches to literacy, and incorporate technology as much as possible—it’s a simple way to make tasks accessible to him, and Aiden loves technology! 

Sight words
When learning sight words, repetition, memorization of words, and discussing salient visual features and comparative language with the words have been helpful. In collaboration with his TVI, we’ve created a running sight word list of words he knows and will plan to learn. As part of learning each word, we use discrimination tasks, recognition tasks, and identification tasks. Using this approach shows us that he does well with discrimination and recognition, but identification of a word in isolation is still difficult for him. This strategy allows us to enable Aiden to show what he knows while still problem-solving on ways to help him make progress. 

What is the difference between visual discrimination, visual recognition, and visual identification? 
A wide range of research continues to look at these levels of visual perception and Dr. Roman-Lantzy discusses this concept in the context of learning tasks in Cortical Visual Impairment: Advanced Principals

Phonetic sounds
Aiden does well with beginning sounds of a word but still struggles with separating out the middle and ending sounds, and has difficulty with sounding out the whole word altogether. I separate out the letters of the word to individualize the phonetic sounds of each part and then bring them together to repeat the sounds to make the word. For example, with the word “temperature,” I separate it out by each syllable: “tem-per-a-ture.” Then I bring it back together after working on the individual sounds. Breaking it down into smaller parts seemed to help him understand the word better and then we couple it with multisensory learning of the word. For example, talk about the definition, review pictures, feel temperatures by touching hot/cold water, talk about the weather, and experience the current weather outside. A multisensory approach makes the word meaningful and easier to memorize.

Assistive technology for reading and writing
Aiden primarily reads digital books with a backlit surface. He reads books created in Pictello or adapted in Google docs about past trips and high-interest stories. We also use Epic and Bookflix. The words are too close together in these formats and the backgrounds are too visually complex, so I typically zoom in, read and point to each word as I’m reading. When I get to a word I know he’s working on or should know, I have him say those words.

Due to Aiden’s poor hand strength and control, he typically types versus writes. He uses an adapted keyboard and enjoys typing letters to friends and family.  He types all of his thank you cards and birthday cards which is a way to incorporate literacy and his interest in technology.  

Using Alexa
Aiden has an Alexa, which is very motivating for him to articulate and have more intelligible speech so that Alexa can understand him. It broke my heart initially when she couldn’t understand a single word he said, but he worked on his articulation and completing sentences. And now Alexa understands what he’s requesting! There are times he still struggles and asks for help, but I’ve been really impressed with his concentration on improving. He can now request her to play certain songs, ask for meditation at night, find out the weather for the day, check the time, and set the timer. It just shows the power of motivation!

Aiden is all in and continues to show the world his gifts. Angela, Aiden’s mom, so expertly describes the constant need to figure things out as she navigates raising a child with CVI and complex communication needs. Teaching and supporting our kids with CVI requires a whole-child, dynamic, and multi-sensory approach. Because with access, our kids thrive. 

Learn more about Childhood Apraxia in Speech (CAS) in children with CVI.

Black and white headshot of visual artist Kendall Cowle

How visual artist Kendall Cowle uses photography to reframe the CVI experience

August wearing glassing sitting and smiling in front of a window.

How my son’s CVI diagnosis broke, then rebuilt my heart

Headshots of the hosts and panelists. From top left to right: Nicola, Nai, Rafeal. From bottom left to right: Dijana, Amanda, Christina

Adults with CVI share how “CVI leaves no stone unturned”