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Just opened: registration for the American Conference on Pediatric Brain-based Visual Impairment (PCVI). It will be a hybrid event this year, with both a live in-person conference with simultaneous streaming.
Christine Roman, PhD and I will be presenting a case study of an older student whose CVI journey didn't begin with CVI interventions/adaptations implemented until she was nearly 16.
A look back over 4 years reveals how those adaptations changed her life, learning and functional vision.
That young lady is our very own Emma. Excited to share our journey. πͺβ€οΈπͺ
https://app.ce-go.com/pbvi2022
Well, this hasn't happened ever... a post on our website www.seecvispeakaac.om. π― Haaa! π€¦ββοΈ
It provides a little history of how we got started, how it grew and evolved and what it looks like now.
I've alluded to the fact that it has been a long couple of years. We'll be headed back into the hospital again in 2 weeks.
Emma had bi-lateral leg reconstruction and a triple osteotomy of her right hip in February 2021. (not all went according to plan π). She had (revision) surgery on March 1.
While we've been busy managing her body, she remarkably increased her functional vision and use of her talker. πͺβ€οΈπ
Ridiculously proud of her perseverance through all of this.
So, before we go back to managing it crazy lives, I thought I would get back to the site (which has been dormant since before Covid), and finally get around to sharing a bit of how Emma's talker and vision moved from middle Phase II to high Phase III and what her talker looks like now.
Looking back, it has been an awesome journey; we've learned so much...
Keep on keeping on, everyone!
We are cheering you on! And, though you might not see us popping up on social, know that we are rooting for each of you as you give your child access to their voice and their world.
β€οΈ Lynn & Emma β€οΈ
It's coming! If you need AAC apps, April and October are when to buy. Assistiveware's sale is March 29 - April 4!
We use Proloquo2Go for our system as it is highly customizable to meet CVI visual and motor access needs.
There are other systems which are also highly customizable (Snap Core if the first to come to mind), but P2Go is what we use.
Happy Spring into AAC! π
Life with a child with multiple disabilities is not always easy. But, this girl will always have a way to tell us what is on her mind. Tucked in bed during this last challenge, always her talker. β€οΈππ§ π¬π£οΈ
Happy White Cane Day!!
O&M for individuals with CVI is imperative. Canes help with lower field loss and more!! β€οΈ
While this girl is pretty far and away from using her white cane post-surgery, it has proven to be a valuable tool for her independent ambulation!
We're looking forward to this becoming her norm again. She certainly did try and took a few steps with it when we tried in PT. She can't wait to get back to this too. πͺβ€οΈπͺ
#whitecanesforCVI
#whitecane_CVI
#whitecaneday
#seeCVI
#seeCVIspeakAAC
#seeCVIspeakAdvocacy
#OandM
How to know you've created an Alexa monster... π€£ππ€£
Today was a day at home to stave off a head cold, likely brought in by allergies.
I turned off the tv, told her it was time for her to rest, nap, actually, closed the door. No sooner had I taken a few steps away did I hear, "Alexa, turn on Fire TV..." π€¦
If you listen closely, you can hear her tell Alexa to play .Jonah. ππͺβ€οΈπͺπ€£
#aacawareness
#presumecompetence
#ohYesSheCan
#assistivetechnology
#proloquo2go
#seeCVIspeakAAC
#adapted4her
Alexa & AAC π
Watching movies has always been her thing. I've tried to curtail it over the years and we had some good success, but this year has been a hard, hard year. 2021 has been and continues to be full of life changing challenges.
It was time to embrace the thing which brings her joy during these hard times and give her more agency over accessing them.
Enter Alexa. Her own. Full control over her TV (with the exception of overnight).
Smarty just saw me demonstrate this morning before school, trialing it after dinner.
Pretty quick to grasp! Waiting to allow Alexa to process will take the most time to learn no doubt. π
It took me longer to figure out how to set it up with her talker than her to figure out how to get to her movies on her TV.
π€£ππ€£
All about that motivation!! π
Go girl!! You rock!!
#AACawareness
#speakAAC
#Alexa
#AlexaCommunicationPartner
#independence
#seeCVIspeakAAC
#WhateverItTakes
#ExogenBoneStimulator
Catch it if you can (need)!
We use a completely custom page set designed explicitly for Emma on @proloqo2go.
Quick #aacawarenessmonth promo on their software BUT only until Oct 10, 2021!!!
Thought for the day.
This is our truth.
β€οΈ
Stay the course.
β€οΈ
Persevere.
β€οΈ
Believe.
β€οΈ
#cvi
#aac
#seeCVIspeakAAC
#itTakesTime