Adventures in Advocacy / NE AER / Part Two of Three

Hello Fellow Families of Delightful, Sometimes Exasperating Children Who Happen to Have CVI and Who Sometimes Knee You in the Neck,
Why yes, maybe E did wake up at 4:30 this morning and kneed me in the neck while climbing into my bed. Once settled comfortably (for her) on my chest, she leaned over to kiss my forehead about a dozen times. It was pitch black, so let’s just say she missed a few times. In my semi-consciousness, I dreamed I was being water boarded.

This is an accurate description of the power dynamic in our relationship.

Moving on.

I promised more information from NE AER.  This post turned into a doozy.  So, I am splitting it in two.
To recap: There were 6 presentations about CVI at this conference! This is a big deal. Bravo to the Co-Chairs of the 2017 NE/AER Program Committee, Sharon Marie and Martha Delaney for their development of this year’s CVI track.
(You may want to reach out to the folks planning your area’s next AER conference. You could ask how many presentations they will be having on Cortical Visual Impairment. Just a thought.)
I was present for Peg Palmer’s presentation “Assessing children with CVI using Dr. Roman-Lantzy’s CVI Range,” Dr. Christine Roman-Lantzy’s follow up discussion following her “Implications of CVI in the Development of Literacy, Language, and Social Skills” presentation, and Ellen Mazel‘s presentation, “Serving our students with CVI: Learning Assessments and Intervention Strategies.”

Here are some of my takeaways from this conference:

The Perkins-Roman CVI Range endorsement is a necessary starting point and here’s why.  (Good to know for future stare-downs with school administrators about the importance of proper training for the teachers who work with our children.)

Right off the bat, Dr. Roman-Lantzy asked the discussion group if any of them were unsure about the CVI Range endorsement.
As a parent, I was surprised by this question. I’m just glad an endorsement exists  to give teachers the skills they need to improve educational outcomes for our children. I was more surprised when a few of the teachers raised their hands.

Dr. Roman-Lantzy asked them why they had reservations.
One of the teachers explained that she knew several experienced TVI who did great work with children with CVI but did not have the endorsement. Some teachers did not see the point of the endorsement. Some thought the CVI Range endorsement was extra work – more hoops to jump through at their own expense- for teachers who already had substantial experience working with children with CVI.
Dr. Roman-Lantzy acknowledged their doubts and agreed that there are experienced TVI who are more than capable of working with children with CVI. She mentioned that she herself is not endorsed.  (My mind was blown.)
Her point – an important one – was that while CVI has been discussed over the years within the field of the education of children with vision loss, there has yet to be a rigorous, commonly accepted standard of training for teachers to work with children with CVI.

(This leads me to paraphrase Ellen Mazel. My apologies to Ellen Mazel. )

The 2 most dangerous teachers Ellen Mazel has ever met are
1. The TVI who has never heard of CVI
2. The TVI who has been to one workshop / conference on CVI.
Boy, did that resonate with me. I wonder how many of us have had a teacher tell us – “Oh, I know CVI. I took a workshop once.”
Surely, it’s not just me. I bet I’d recognize the slight indentation on your forehead where you banged your head on the table after hearing these words. It’s okay. I’ve got one too.

We have been affirmed by the CVI Teacher herself!

This was worth the whole trip to Vermont, including losing my driver’s license, and, the resulting extra security patdowns to get home.
Now some history on the development of the CVI Range endorsement.

(Use this when you begin advocating for your child by telling your school system that a CVI Range endorsed educator is a requirement for your child’s ACCESS to her education.)
The lack of a standard educational protocol for training TVI to work with children with CVI has been a concern for Dr. Roman-Lantzy for years. In recent years, she went to the associations that recommend topics of study for university TVI preparation programs.

She asked them to recommend that CVI be included, to no avail.

Then, she approached Perkins School for the Blind.

Perkins met the challenge of training teachers to educate children with the #1 pediatric visual impairment in America today (and tomorrow and 9 months from now and 2 years from now).  It’s not going away, folks.

To address the growing need, Dr. Roman-Lantzy and Perkins collaborated to create the endorsement and other classes surrounding specific aspects of CVI.
For their willingness to address the issue of CVI, this CVI mom applauds Perkins and its President and CEO, Dave Power. Dave Power is also the father of a son with dual sensory impairments. It does not surprise me that a parent of a special needs child made the decision to move the CVI Range endorsement forward.
During the discussion session, Dr. Roman-Lantzy explained that “no one is getting rich off of the CVI Range endorsement.” There are administrative costs to running the classes which are offset by the fees.
She further explained that the creation of the CVI Range endorsement was a way to acknowledge that every endorsee has the same foundation of knowledge about CVI and has the ability to use the CVI Range accurately and effectively.  The endorsement means you know how to use the CVI range, however, knowing how to address the unique learning needs of every child identified with CVI is an ongoing learning process. CVI is a complex diagnosis. It covers a wide spectrum of children with varied abilities. Research is still unfolding.

Learning all things CVI is happening for all of us in real time.
Hearing this discussion, I can understand why an overworked Teacher of the Visually Impaired with too many children on her caseload and fewer available resources would be dubious about extra training for a “new” visual impairment.

She does not have extra time. She is being pulled in too many directions. Depending on the state and depending on the day, she may be expected to provide early intervention in the morning for an infant with albinism in a neighboring county; at lunchtime, she may be pulled into an IEP meeting for a 4th grader with nystagmus; in the afternoon, she may be transcribing civics homework into braille for a high school senior who is blind.
Changes in our educational system to give TVI fewer caseloads, more resources, more extensive professional development, and the time it requires to do their job well need to happen yesterday.
It is simply too much to ask these teachers to do more.

BUT,

nothing about having a child with Cortical Visual Impairment is simple. 
Until we can get universities to add CVI to their teacher preparation programs

AND,
until we can make sweeping changes in the system of educating children with vision loss

We have to ask.

Our children can’t wait. (Ellen Mazel again, everyone!)

Yet, they are waiting.

Every day a child with CVI sits in a classroom without appropriate accommodations – without ACCESS – to her education, she is losing learning time.

The awareness of time lost is the motor that drives CVI parents to ask overworked teachers to learn more about CVI.  It is why we ask them to help us give our children access.

To wrap up this post, I will repeat what I said to the TVI and COMS in my presentation.

We need you to believe that our children can learn.  

We don’t expect you to have all the answers.  

Help us find the answers.  

We have to start somewhere.  

Thanks to these formidable ladies, we have a starting point.  

 

CVI ladies

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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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