“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 – misconception regarding the Perkins-Roman CVI Range Endorsement.

And, I couldn’t get it out of my head.  It really burned my beans so to speak.

We CVI families 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 misconception 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

or

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 said YES.

Perkins and Dave Power welcomed children with CVI into the scope of their mission.  Mary Zatta worked with Dr. Roman-Lantzy on developing the endorsement so educators and therapists would have a reliable tool to use when working with children with CVI.  Perkins has since developed a wide variety of classes, webinars, and on-site programming around Cortical Visual Impairment  to further support children, families and educators.

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 recognizing a need and for taking that first uncertain step.

I respectfully suggest to anyone who wants to dismiss the CVI Range Endorsement, do your homework.  Understand it.  Understand the process of teaching children with CVI.  

If and 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? 

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.

Cynicism serves no one.

I have found a path within the work of Dr. Christine Roman-Lantzy. We have seen success on this path. Our daughter is learning to recognize pictures.  She is learning to sign.  She is learning to communicate and to understand concepts.

We have found hope on this path.  She will be able to communicate her wants and needs.  She will have enjoyable activities in her life and opportunities to socialize in a meaningful way because we are learning how to teach her about the world in a way she can understand.

Why would you deny my family this information, this reliable and valid 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.

We don’t have time to be cynical.  Cynicism kills hope.

Sometimes hope is all we have.

CVI is new territory for medical and educational professionals.  We need more research.  We need to raise awareness.  There is a newness to this movement that makes some doctors and teachers of the visually impaired uncomfortable.  It is uncomfortable.  We get it.  Parents of children with CVI live outside of our comfort zones all the time. We are learning all the time. Sometimes our efforts fall short of our expectations. We learn from them and try again. There is no other option for us.

But, for those who choose to stand on the sidelines casting judgement and spreading misinformation about Perkins,  Dr. Roman-Lantzy, and exceptional teachers like Ellen Mazel, I ask you: What purpose does your criticism serve?  Who does it help?

Aren’t you supposed to be helping the children and their families?  How are you helping?

What a disappointment it is to not even try.

What a greater disappointment to disregard those who do.

 

 

 

 

Published by

CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

One thought on ““First they ignore you..”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s