“Kids Can’t Wait”

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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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Momifesto: A definition

CVI Momifesto8 Comments

Welcome!

If you have found CVI Momifesto, you are likely searching for resources for a child you love or with whom you work who has received the diagnosis of Cortical Visual Impairment.

You may find that the search leaves you with more questions than answers.

You may find that experts in CVI are few and far between.  You may feel isolated and overwhelmed.

I did.

As the mother of an 11-year-old girl with CVI and other diagnoses, I still do quite frequently.

Despite years of research and discussion about Cortical Visual Impairment (also termed “Cerebral” Visual Impairment in an ongoing debate), there remains a significant lack of understanding about CVI in medical and educational communities in the United States.

I am acutely aware of how hard it is to get answers about CVI and how it affects your child’s development.  I have been fighting an uphill battle since my daughter was diagnosed to get her therapists and teachers to take CVI seriously.

Over the past few years, I began reading comments on Facebook pages about CVI.  I saw posts from parents of newly diagnosed infants and toddlers struggling with the same questions I had a decade ago.  I still see in the posts of new parents the same anxiety and frustration I have been experiencing from preschool to – gasp – 6th grade.

There has got to be a way to make life easier for children with CVI and their families.   We need to form a community.

We need a manifesto. 

Manifesto:  a written statement declaring publicly the intentions, motives, or views of its issuer. 

(Thanks, Merriam-Webster!)

A written statement declaring intentions, motives, and views of issuer….yes.

This is a good start,

however,

it lacks the drive and the passion of all of the moms who are

staying up late googling CVI,

making copies of research for early intervention and education teams,

creating homemade “Little Rooms,”

painting the backgrounds of board books with black paint,

cutting out picture after picture to make experience books,

buying out the local slinky supply,

attending conferences and workshops,

fighting with the school to provide larger, less complex text “bubbled” in red,

arguing with the school psychologist that her child’s “behavior” problem may be a visual problem instead

and on and on and on.

I see you, ladies.

I’ve met you at conferences. I’ve seen your posts of incredible D-I-Y projects geared towards bringing the world to your child. I’ve read about your child’s progress and your challenges.  I’ve heard stories about you from therapists who work with your child as well as my own.

There is a vibrant and committed community of parents out there every day raising awareness about CVI on their own.

Getting the services our children need to have ACCESS to their world should not be so difficult.

To raise awareness about Cortical Visual Impairment, we need a manifesto with a MOM in it.  Moms get stuff done.

(P.S. This is in no way meant to dismiss the contribution of CVI Dads. I’m a mom. It is the perspective I bring to the table. Plus, you have to admit, “CVI Dadifesto” just doesn’t have the same ring to it.)

So, how about this?

Momifesto:  a written statement from a frustrated mom publicly stating her intentions, motives, and views about what needs to be done for children with CVI.

I present, for your perusal (and subject to change as I get better at this...):  

CVI Momifesto

  • Children with Cortical Visual Impairment need to receive an accurate diagnosis from a pediatric ophthalmologist or a pediatric neuro-ophthalmologist within the first year of life or as soon as possible if CVI is acquired.
  • Once identified with CVI, children need to be quickly referred to their state’s early intervention system because the treatment for CVI is an educational approach of modifying the child’s environment and training parents and caregivers to introduce the world to the child in a specific, strategic way. 
  • Each state’s early intervention system must be able to address the unique needs of children with CVI by providing frequent, ongoing home visits from a CVI endorsed early interventionist.  (Notice I did not say Teacher of the Visually Impaired.  More to come on that later.)
  • At preschool age, every child with CVI needs to transition to a school placement with CVI endorsed professionals on staff to accommodate the child’s unique learning needs.
  • Parents of children with CVI must be included as an expert voice on their child’s IEP team.
  • School systems must recognize the need for specialized education in CVI for their teachers and staff.  CVI endorsed educators, therapists, and aides must be available to children with CVI in both public and private school settings.
  • The general public needs to acknowledge CVI as the #1 pediatric visual impairment in the Western World.
  • The community of parents, doctors, educators, and therapists who work with children with CVI need to come together to advocate for changes in public policy to improve the educational outcomes for our children.

My motives are simple.

I want to reach my child.

CVI affects my daughter’s access to her environment.

I need to help her get access to the world around her.

Like every parent, I want her to be as independent as she can be.  I want her to be safe. I want her to experience joy.  I want her to know she is loved.  I want to communicate with her.  I want her to be able to communicate with others.

Cortical Visual Impairment makes all of this more complicated.

But, not impossible.

She matters.

Every child with CVI matters.

For our children to see the world, the world needs to see our children.

It is time.

Stay tuned.

 

(Photo credit: Jessamyn North Photography)