Name that Neurological Visual Impairment & Love the Hub

Hello you good looking fellow parents of glorious children who happen to have CVI!

(Only one cup of coffee so far.  Why do you ask?)

I have been researching resources on Cortical Visual Impairment for the website of the up and coming non-profit organization, the Pediatric Cortical Visual Impairment Society (PCVI).

Often, when researching, information will come up about Cerebral Visual Impairment.   Generally speaking, Cerebral Visual Impairment is what we in the U.S. call Cortical Visual Impairment or, even, Cerebral/Cortical VI, aka C/CVI.  OK?  Confused yet?

For decades, researchers, teachers, and doctors on different continents have been debating what title to use to most accurately describe this neurologically based visual condition.

Here’s is one random mom’s perspective:  Whether you prefer “Cerebral” or “Cortical” should not hinder the progress that needs to be made in getting this condition recognized, diagnosed, and addressed in the classroom.

I would happily call CVI, “Shirley,” “Joe,” or “Rumpelstiltskin” if it meant that schools understood that they need to have endorsed teachers and a team approach to working with children with this unique visual impairment.

But I digress.  We were talking about resources.  There is so much good information out there in cyberspace.  There is also a great deal of outdated information.  Much more than when I began looking 10 years ago.

Sorting through it is time consuming.  And, we all know how much extra time we have, am I right?

Here’s a timesaver and an excellent resource:  the CVI Hub on the website for Perkins School for the Blind.

http://www.perkinselearning.org/cvi

Perkins “gets” CVI and understands that more progress in diagnosing and educating children with CVI needs to happen YESTERDAY.

I particularly appreciate Perkins’ eagerness to share parent experiences and parent/teacher experiences.

As we have mentioned before, there are fellow CVI parents who are moving mountains and raising awareness on behalf of their children.  Their stories are important for the rest of us.  Their successes and their challenges give us greater perspective about our own experiences.

Here are 3 resources on the Hub that have come directly from CVI parents (There are plenty more, as well as a wealth of information from teachers, doctors, and researchers).

1. Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3. 

A dedicated and fierce CVI Mom, Gunjan Rastogi-Wilson, and her family’s CVI Endorsed TVI, the incomparable MaryAnne Roberto, recently did a webinar for the CVI Hub.  This webinar is a great resource for parents at the beginning of their CVI journey.  You will find it at http://www.perkinselearning.org/videos/webinar/journey-cvi-experience-birth.

2. Accessible Ipad Apps:  Eric Jerman 

Eric Jerman is a CVI Dad who received his master’s degree in Education for Orientation and Mobility from UMass. He has collected a list of over 200 iPad apps and has organized them into four categories.  1. Cause and Effect   2.  Digital Books for Interactive Stories  3. Music 4. Communication

“My son can’t see five feet beyond him, so I bring the world to him using the IPad.”

I, for one, am so glad he is sharing his knowledge to help me bring the world to my daughter.

http://www.perkinselearning.org/technology/posts/accessible-ipad

3.  Talking points for school districts

YES, school districts!

When you are debating with your local school system about the need for CVI Endorsed Teachers, refer to the CVI Hub site for information you can take to your next IEP meeting.

On the Hub site for School Districts, you will find the following quote:

Perkins’ reputation in the field is unparalleled.  When my staff required professional development on working with students with CVI, I knew I could trust the experts at Perkins.”  — Irene M. Meier, Ph.D., Director of Special Education at Fairfax County Public Schools, Falls Church, Virginia

The Fairfax County Public School System has a national reputation for excellence.  FCPS has enrolled several teachers in the CVI Endorsement and is training teachers, therapists, and aides in Deaf-Blind Modules.

This training is happending because a parent (guess who?) kept bringing in research articles, reports from Dr. Roman and Dr. Sandy Newcomb, and statements on CVI from the American Printing House for the Blind and the American Foundation for the Blind.  It took the better part of 3 years to get momentum going, but there is momentum.

If other school systems are seeking out more training on Cortical Visual Impairment, why isn’t yours?

Fair question, don’t you think?

 

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CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

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