Thoughts & Happenings

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Emma’s system, See CVI, Speak AAC, becomes a Clinical Focus in AJSLP!

In 2022, Emma and I had the opportunity to share her talker design with a team from Penn State University’s Communication Science Disorders department. That Zoom meeting led to something incredible: a paper which details the design considerations we implemented in creating Emma’s system, and introduces a framework on how to work with others with CVI who need AAC to create a custom system for them too. AMAZING!

“An Evidence-Based Approach to Augmentative and Alternative Communication Design for Individuals With Cortical Visual Impairment” was published in the American Journal for Speech Language Pathology, online in August and in print in September (0pen Access!).

We have also had the opportunity to present the content of the paper with members of the PSU CSD team in person in San Jose, Pittsburg and Boston as well as online. Since being published, at the time of this writing (January 2024) the paper has been downloaded over 7,800 around the world.

Emma and I continue to work with the team at PSU to develop better access for individuals with CVI and complex bodies. We are in the midst of two different projects now and are so excited to be engaged in moving the field forward. As more information is published on our work, I’ll be sure to share. We are so grateful to those who fully see our children and adults with CVI who need AAC, who recognize that their needs are unique and that there is much work to do in this area.

ONWARD!

Lynn & Emma

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The evolution of see CVI speak AAC

When this site was first launched in 2018, we were a little over a year into building out Emma’s AAC.

It started with pictures in opposing corners and quickly progressed to each of the four corners being used. Then use of the center location. And swiping to access words in a grouping beyond the 5 spaces on the screen. Bubbled words were deployed to help in word recognition as Emma was just on the cusp of Phase III and beginning to learn to read those words by site. And the Roman Word Bubbling tool was just a glimmer in our eye, all those bubbles were drawn by hand.

see CVI speak AAC in 2019

Her functional vision and literacy skills continued to develop, together. Some of her word selection was assisted no doubt by motor memory in knowing which words were on a screen like we know how to drive home without giving it much thought.

As she expanded her use of her talker, her functional vision was increasing too.

Well into high Phase III as of October 2021, gone are ALL the bubbles. There are hundreds of words at Emma’s disposal which are both used by her and modeled by us as we continue to branch out to give her more and more exposure to words.

see CVI speak AAC in 2021

A fun thing we have noted is now, how she uses videos she loves to tell us things in addition to her talker. It has been wonderful to see how she expands her use of ALL communication methods with people. And how funny she finds it when we verbal speakers catch one of her games. She’s so clever. And ever learning how to engage us in different ways as we work to engage her in ours. The wrinkled-nose giggles that burst out of her when we recognize what she is saying, in any and every way she is saying it, makes the work we pour into this process feel like winning all day long.

And, if connection, laughter and joy are what all of this brings her, and us, then bring it on!

To all of the teachers, therapists, families and individuals working hard for our loved ones with CVI and CCN, I hope you find that laughter and joy along the road too.

xoxo,

Lynn & Emma

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Gathering thoughts…

With this site launching primarily to show additional screen shots of our pages, I haven't had a chance to collect my thoughts to share.

They will come... I expect to share more about how we arrived at this system, how we choose between photographic images and words and how we organize the words in Emma's system.

Meanwhile, if there is something specific you have in mind to ask, please do using the contact form here.

 

Thank you!

 

If you have a child with different abilities and live a different kind of normal, then I am sure I don't have to explain that life and living comes in ebbs and flows.  When our life allows, I'll be in share mode. When it doesn't, it will be radio silence.

...   Please know if reponses are slow, it is not a personal affront to you or your question, more likely living life upside down on our end. If questions go unanswered for a period of more than two weeks, feel free to send again. Better yet, message us on our Facebook page @seeCVIspeakAAC (link is in bottom bar). Sometimes it is easier to retreive FB messages than to get into the backend of the site.

With love,

Lynn