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Follow us on Insta (or Facebook if that’s your preference) to see what is happening in our world of See CVI, Speak AAC, where we share quick shots of communication exchanges, advocacy, and build outs.

We've waited (pushed) a long time for movement on

We've waited (pushed) a long time for movement on CVI. Happy to share fresh digital ink on that movement. Many thanks to all who are pushing the rock uphill to improve the lives of our children.

From the American Academy of Pediatrics: Clinical Report
Diagnosis and Care of Children With Cerebral/Cortical Visual Impairment: Clinical Report

https://doi.org/10.1542/peds.2024-068465

And the NIH (a working definition of CVI):

https://www.nih.gov/news-events/news-releases/nih-led-scientific-team-defines-elements-brain-based-visual-impairment-children?fbclid=IwY2xjawGri1hleHRuA2FlbQIxMQABHW__a4kbgk6iaoo0mcqXOe3za-eFQ38TqPk7oSGlg2zPh2O92g6esK2mpg_aem_S2w6F7DK40buHdLHIddddQ

Did you register to win 1 of 2 tickets to Innovati

Did you register to win 1 of 2 tickets to Innovations in CVI from @pcvis.vision?? Didn't miss your chance, drawing closes on August 16th!

Hope to see you in Pittsburgh!
#CVI
#CVIresearch
#CVIadvocacy
#CVIprofessionaldevelopment
#seeCVIspeakAAC

Fork iterations over time... What does adapt unti

Fork iterations over time...

What does adapt until you achieve look like in real life? Here's what we've tried over the past 5 years. Crazy, huh?? We've been trying like mad over the last 3 years especially.

Grateful for a collaborative OT who joined us, and kept us too! 😂 I know I ask a lot of questions, want to try a lot of things, some of them quite unique. 😉

We've found an OT who thinks outside of the box, and we are so thankful for her (cheers to you, Catherine!!). And Steph before her for 15 years, also an amazing OT!! How blessed are we to find creative providers?!? VERY and we know it!! 🤩❤️🙌🥰

#adaptedlife
#adaptedADLs
#OT
#seeCVIspeakAAC
#seeCVI
#hnrnph2
#livedifferently

Years of different adaptations lead to the one tha

Years of different adaptations lead to the one that worked. That also means years of perseverance to get to that big win. For her, for us, for teams. The end tool isn't exactly pretty (!) but it is functional, and that's really all that matters. 😃

You likely won't see this out in the community (complexity) but at home we strive for independence. Once that is locked in, we begin introducing in community settings as appropriate. It's a journey of a bazillion steps, but we're moving forward one small step at a time. ❤️💪❤️

#seeCVI
#seeCVIspeakAdvocacy
#adaptations
#inchstones
#persistence
#InstaMorph
#MoldablePlasticPellets
#OT_Hacker

Emma and our family were privileged to be honored

Emma and our family were privileged to be honored at the @childrenshomepgh Gala in April, showcasing the important work done through the Pediatric VIEW Program and the impact of Dr. Christine Roman has on our kid's lives. To our great surprise, their Spring newsletter showed up with our family on the cover and the moment etched in my memory from the night the beautiful silent sign language applause those in attendance gave Emma, Dr. Roman and Pam Keen, the CEO was the center spread.

After explaining how CVI impacts our lives, and how Emma is sensitive to sound (note her pained expression as she uses her talker and the 🎤 and speaker amplify her message), we asked that the audience not applaud in a typical fashion, but in using the sign for applause, out of respect for her.

To see, and not hear a single person clap, took my breath away. What a gift. What an honor. Thank you, Children's Home of Pittsburgh and Lemieux Family Center, Pam Keen, Dr. Roman and the incredible team there as well as the attendees of the Gala. It was a night we will never forget! Thrilled to have been a small part of the incredible night!

I so enjoyed this informal discussion, one like I

I so enjoyed this informal discussion, one like I have not had an opportunity to have as yet. Brenda and Sarah were curious and generous and asked about things I hadn't spoken of publicly and was pleasantly surprised to be asked. And, you can tell as I worked to remember (!). It is a meandering walk through Emma's developmental history with a focus on her development and communication over her life thus far. Wow, such a unique experience for me!

All because I knew Dr. Krista Wilkinson would be following along after me and could address all the science behind what we did... and more!

Bookends to the process of developing accessible, evidence-based AAC for CVI.

Check it out!
Elko episode: https://www.youtube.com/watch?v=bE56Nj6NTs0

Wilkinson episode:
https://www.youtube.com/watch?v=-N0MYjrheQM

Thank you, Sarah and Brenda, for being such great podcast hosts! And for @special_ed_tech_center for having us!!

Enroute to the NIH/NEI National CVI Registry Exper

Enroute to the NIH/NEI National CVI Registry Expert Panel Meeting in Boston and honored to be representing families and individuals with CVI at this meeting. I pray I serve both well.

Individuals like our daughter, Emma, who brings so much to this world while being impacted with not only CVI, but motor and speech impairments, are vastly underrepresented. I wear the weight of that knowledge and hope to bring that to the table as I represent her and others like her at this meeting.

Grateful that CVI is being given the attention it needs for a better future for our children. To the future!! 🙏💪❤️💪🙏

Happy to share that TobiiDynavox has released a CV

Happy to share that TobiiDynavox has released a CVI Accommodations Guide. I was invited to review the Guide throughout its development and feel it is a nice start for those who don't know how to begin (of course, our paper is too and it is referenced in the Guide).

And, while this is a TD Guide, the majority of the information is system agnostic and can be used across systems and even paper-based access methods.

As are things with CVI, accommodations for each child need to be individually assessed based on the child and their use of vision and motor skills. But pleased that the field, and TD, a leading AAC developer, is making efforts to help children with CVI who require AAC have their specific needs met.

It will be a live document, with changes made over time as we learn more about access methods and accommodations, so I am providing a link, not the PDF, so you can check it directly to ensure you are referencing the most recent edition.

https://download.mytobiidynavox.com/Diagnosis%20Kits/CVI/TD_CVI_AacAccommodations.pdf

Bravo, TD, for seeing a need and filling it. Here's to more access for our loved ones with CVI!

Did you know that April is CVI Literacy Awareness

Did you know that April is CVI Literacy Awareness Month? If not, now you do! 😉

Literacy needs for individuals with CVI are a good bit different than typical literacy instruction. Our kids need more supports to become print readers. It has to be an individual approach based on the child's CVI Range score and more. Read more about it in these Pediatric Cortical Visual Impairment Society posts:

https://pcvis.vision/educators-and-therapists/cvi-and-literacy/

https://pcvis.vision/cvi-and-literacy-phonemic-awareness/

https://pcvis.vision/moving-toward-literacy-goals-making-reading-accessible-and-fun-for-students-with-cvi/

#pcvis @pcvis.vision
#cviliteracy
#apriliscviliterayawarenessmonth
#seecvispeakaac

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