Adventures in Advocacy / VA AER 2018

Hello Fellow Families of Children with CVI,

Last Thursday, I had the opportunity to present to the annual conference of the Virginia Association for Education and Rehabilitation of the Blind and Visually Impaired.

At the Pediatric Cortical Visual Impairment Society conference in Omaha last summer, Dr. Sandy Newcomb and I did a presentation “CVI:  Stuck in Phase II” about non-verbal children.

We submitted a similar presentation for Virginia AER.

Then, Dr. Sandy and the ladies from the Maryland Deaf-Blind Project were invited to the Royal Institute for Deaf and Blind Children in Australia to teach their staff about Cortical Visual Impairment.

So, Australia won Dr. Sandy and Virginia AER got me and my parent’s perspective.

I told the lovely folks at AER that Dr. Sandy couldn’t make it due to a rogue koala attack and we carried on.  It was great to see Mark Richert and Rebecca Sheffield of the American Foundation for the Blind in the audience.   Which reminds me…

FYI and ACTION ITEM: AFB will be hosting a conference call for the CVI community titled Mobilizing Advocacy to Improve Special Education for Children with CVI on Wednesday, March 14th at 8:30 until 11:30 p.m.  

To join the call:  1-866-939-3921 / Code: 46438061)

Image:  A slide projected onto a screen.  The slide reads CVI: Stuck in Phase II / A Parent’s Perspective

So here’s  how I figure it –

If sharing my story about being Eliza’s mom and the challenges we face in getting CVI understood by — well, everyone, really…..

If my explanation of how hard it has been to find (or even create)  a Free and Appropriate Public Education…

If I can share our experiences in getting Eliza assessed on the CVI Range and talk about modifications that are working for us and modifications that haven’t worked…..

If ANY of this information gives the folks in the audience a better understanding of what CVI is and a dose of empathy for what CVI families go through on a daily, weekly, monthly, … basis,

Then, what we have gone through will help someone else.   I can live with this.

AND

If  I get the chance to spread important information about CVI to people who may not have heard it before, then so much the better. 

Information such as the following:

• Cortical Visual Impairment is the #1 Pediatric Visual Impairment in First World Countries
• The presence of CVI is not an indicator of cognitive ability.
• The presence of CVI is not an indicator of cognitive ability.
• Every child with Cortical Visual Impairment has unique learning needs.
• CHILDREN WITH CVI (just like children with ocular vision loss) ARE NOT INCIDENTAL LEARNERS.
• The accommodations necessary for children with CVI are DIFFERENT than accommodations for children with ocular vision loss.
• They miss out on learning opportunities because they cannot make sense of the visual world around them.

Oh, yeah and –

The presence of CVI is not an indicator of cognitive ability.

When they get tired of hearing a mom’s perspective, I bring out the experts:

CVI Experts Weigh In

Dr. Sandra Newcomb (Before the unfortunate koala incident of 2018) :

Image:  A woman petting a koala bear sitting in a tree.

Presumption of limited cognitive skills and abilities leads to limiting visual access to information, specifically communication information (objects and pictures)

• Becomes self fulfilling 
• By limiting a child’s choice and control by limiting visual access to information, you inhibit 
  Communication
  Quality of Life
  Social connection
  Learning
  Participation in family and society

————————————————————————————————————

Ellen Cadigan Mazel, M.Ed. CTVI, CVI Advisor, Perkins School for the Blind:

Be a lifelong learner about the brain. 

Be a lifelong learner about CVI.

Ocular vision loss does not improve.

CVI CAN IMPROVE.

CVI masks cognitive ability.

If we expect improvement, we will get improvement.  

The minute we stop expecting improvement, we will not get improvement.

---

Image:  An empty podium.  A book and a large black posterboard is on a chair in front of the podium.

I showed off the new edition of Dr. Roman-Lantzy’s book, a picture calendar board I saw during Ellen Mazel’s presentation at NE AER and a Start Seeing CVI t-shirt.  Several TVI came up to me afterwards and asked about how to get a t-shirt.

During the presentation I suggested that the Perkins-Roman Endorsement class would be a great place to start learning more about how give a child with CVI visual access to her world.

I have very little to offer the overworked, underappreciated TVI I asked to get more training for our complicated kids.  I did, however, promise to make a pie for any future endorsee.

AND, this time, I even got Julie Durando from the Va Deaf-Blind Project to offer cake or other baked goods.  Apparently, she makes an Italian Wedding Cream Cake that will change your life and is about to begin experimenting with puff pastries.  Puff pastries, people!

I think we are on to something here, folks.

Image:  A pumpkin pie with a slice missing.

Whatever it takes.

 

More Adventures in Advocacy to come!