“Kids Can’t Wait”

The actual quote from a comment to the first post on CVI Momifesto was

“In a perfect world, all TVIs would be knowledgeable and endorsed, but kids can’t wait.

The quote came from Ellen Cadigan Mazel, M.Ed. CTVI.

Ellen is a Cortical Visual Impairment Advisor with many years of experience working with children with deafblindness, and 10 years of experience working with Dr. Roman-Lantzy.  She created her blog, CVI Teacher, in 2014.  Ellen is at the forefront of raising awareness about how to educate children with CVI. She also teaches Cortical Visual Impairment: Assessment and Education in the Visual Studies graduate program at the University of Massachusetts Boston.

She is right.  Kids can’t wait.  The families can’t wait either.

When writing the CVI Momifesto, I very specifically used the term “CVI Endorsed” professional, educator, or therapist.  I did not write Teachers of the Visually Impaired.

I knew this would start a conversation.  It is an important conversation to have.

Parents of children with CVI should know the following: 

Teachers of the Visually Impaired are not automatically equipped to assess and to work with a child with Cortical Visual Impairment just because they are TVI. 

Graduating from a university training program for visual studies does not prepare new TVI to support children with CVI.  They are not trained in the history of CVI.  They are not taught how to use the CVI Range.  They are not trained in making a CVI schedule, accommodations or modifications to a child’s home and school environment.

That’s right, folks.  Cortical Visual Impairment is the #1 pediatric visual impairment in the Western world, yet, our university training programs for teachers of the visually impaired do not cover it in depth (or -stunningly- AT ALL, in some cases).

In case you missed this last part, university training programs (with the exception of the Visual Studies program at the University of Massachusetts Boston) in the United States do not prepare teachers of the visually impaired for children with CVI, the most common pediatric visual impairment.  These programs are supposed to be preparing the educators we, as parents, need to be our first guides and mentors in all things CVI.  They have not risen to the challenge.

Parents need to know this in order to ask very specifically for a TVI, teacher, or therapist, who has completed the Perkins-Roman CVI Range Endorsement. It is a training program offered by the Perkins School for the Blind.  The program was established because of the lack of interest in CVI by the folks who create curricula for VI teacher training on the university level.

I  learned about the current lack of teacher training in CVI years ago, when I began asking questions about why it was so difficult to get CVI even acknowledged in the public school system, let alone find a teacher who understood it.

Kids can’t wait.  But, they do.  Way too often.

We experienced the lack of CVI trained educators over and over again.

I knew I was in trouble during the first meeting with a veteran TVI assigned to our daughter’s first preschool classroom.  I asked her what she knew about Cortical Visual Impairment.  (I had met some of the children she already worked with in the school system and knew that at least 2 of them had also been diagnosed with CVI.)  She thought for a moment, then said, “Oh yeah, I had a kid like that about 20 years ago.”

Flummoxed.  That would be the word I’d use to describe my reaction.  I recognized that she had kids with CVI on her current caseload and I AM NOT A TVI.  Over time, I also realized that she had made no accommodations for those children in their educational settings.  She had not trained the teacher or the aides in the classroom on how to engage a child with CVI.  A month after school started, she dropped off a box of materials from the American Printing House for the Blind.  The aides sorted through the materials without any assistance from her.  Eventually, they sat my daughter in front of a light box with a spinner for “vision time.”  (That sound you just heard was my head banging on the table as I remember this.)

Kids can’t wait.  Yet, they are, and that is unacceptable.

Children with CVI and other sensory loss are sitting in classrooms right now being taught by teachers who do not understand how the children access their environment.   They are missing out on a lot.  This thought makes me crazy.

WHAT YOU CAN DO

Begin conversations with new providers, teachers, therapists, and yes, Teachers of the Visually Impaired by asking about their training and experience.

We have the CVI Endorsement now, so you can ask them if they are CVI Endorsed through the Perkins School for the Blind.  Their reaction will tell you a lot.  Don’t take no for an answer.

You are within your legal rights to demand a provider who has the expertise to work with your child’s vision loss.  It is critical not to overlook this piece of your child’s team.  

What our children need is not extra.

It is access.

(This statement is stolen directly from a presentation by Julie Durando of the Virginia DeafBlind Project.)

If a TVI without a CVI Endorsement says she will do a CVI Range on your child, tell her to put the CVI Range down and no one will get hurt , er, go get some training.  Without the endorsement, her assessment will not give you an accurate result, nor will it give you accurate accommodations and modifications.

You can do it.

Our kids are waiting.

 

 

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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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