“First they ignore you..”

“First they ignore you, then they laugh at you, then they fight you, then you win.”

— misattributed to Mahatma Ghandi according to Snopes (It doesn’t matter who said it. Heck, let’s go Spartacus and all claim it.) 

Yesterday, I reblogged a post from the CVI Teacher, Ellen Mazel.  She was responding to what seems to be a common – and, frankly, disappointing – misperception regarding the Perkins-Roman CVI Range Endorsement.

And, I couldn’t get it out of my head.  The misperception really burned my beans.

We are in this together, so when you mess with one of us, you mess with the whole trailer park.  (My favorite bumper sticker from a visit to Florida some years ago.  You’re welcome.) 

The misperception is this.

Some administrators and educators in the field of the education of children with sensory loss believe that Perkins School for the Blind and Dr. Roman-Lantzy are making themselves rich off of the CVI Range Endorsement.

These folks are vocal and dismissive of the work being done to train providers and parents about how to help children with CVI build their abilities to visually access the world around them.

Ellen Mazel’s post lays out the administrative costs to offer the CVI Range endorsement as explained by Mary Zatta, the Director of Professional  Development at Perkins.

Looking at the numbers, it is easy to see that no person and no organization is becoming wealthy offering training about CVI.   They are serving a need that had gone unmet for decades.

If we are going to be talking about Perkins and Dr. Roman-Lantzy’s work, I’d like to get the facts straight:

Let’s be clear about who we are talking about here.

First, Perkins School for the Blind was established in 1829.  It is the oldest school for the blind in the United States.  It is a 501c3 organization committed to serving individuals who are blind and/or multiply impaired.

Their mission is to prepare children and young adults who are blind with the education, confidence and skills they need to realize their potential.

Perkins is a champion for children with blindness and other disabilities.  It has a long history and stellar reputation for service including the fact that Annie Sullivan – arguably one of the most dedicated and creative teachers ever – was educated there.


Second, Dr. Christine Roman-Lanzty has spent decades of her professional life studying CVI, and seeing thousands –

let’s say that again –

thousands –

of children identified with this brain based visual impairment.

Dr. Roman-Lantzy knew there was a desperate need for an approach to training providers and educators about CVI.

She took it upon herself to approach organizations in the blindness community to help her develop a training


to help her advocate for better training of TVI on the unique learning needs of children with CVI.

The organizations said no.

Then, she approached Perkins.

Perkins School for the Blind under the leadership of President Dave Power, understood the need for serving children with CVI, a quickly growing (yet still under-recognized) population of children. (HOW is that still possible?)

Dr. Roman-Lantzy said, Children with CVI can learn. They deserve to be educated. Their families deserve to be supported.

Perkins and Dave Power welcomed children with CVI into the scope of their mission.

Perkins said YES.

From my perspective, when Perkins agreed to develop the Perkins-Roman Range Endorsement, they said “Yes, your daughter matters.”

I will be forever grateful to them for taking that first uncertain step because they recognized the need.  They know our children have unique learning needs.  They know our children matter.

I respectfully suggest to anyone who wants to dismiss the CVI Range Endorsement, do your homework.

When you have another approach to teach our children, let me know.  I will be the first to read your research, to buy your book, and to engage in a spirited debate.

Until then, what purpose does it serve you to be cynical about people who are legitimately trying to help children with CVI and their families? 

Why would you deny us  information and a method of assessment and education?  

Why would you deny us hope?

Many CVI parents will be happy to give you their anecdotal evidence about how their children’s vision (and consequently, their cognition and their behavior) have improved by working within the scope of Dr. Roman-Lantzy’s work.

I am a mother.  I do not have the luxury of cynicism.  I have a finite amount of time to give my daughter the skills she needs to be as independent as possible.  I am looking (I have spent the last decade) searching for what I can DO for my daughter.

I have found a path within the work of Dr. Christine Roman-Lantzy.   We have seen success on this path.  We have found hope on this path.

If the only thing you have to offer families of children with CVI is a cynical view of the one assessment and educational approach families have, I encourage you to learn more about the CVI Range and to talk to the families.

Cynicism serves no one.

Cynicism kills hope.

Sometimes hope is all we have.

You have to get out of your comfort zone to learn and to grow.  It is uncomfortable.  You feel vulnerable.  We get it.  Parents of children with CVI live outside of our comfort zones all the time.  We are learning all the time. Sometimes we fail.  There is no shame in failing.

What a disappointment it is to not even try.

What a greater disappointment to disregard those who do.





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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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