Adventures in Advocacy: Never Underestimate the Power of Pie

Hello fellow parents of glorious children who happen to have CVI,

Let’s talk a little advocacy with a dash of history, shall we?

When CVI Momifesto began in September, Dr. Sandra Newcomb, a Perkins-Roman Endorsed Consultant and Technical Assistance and Education Specialist at Connections Beyond Sight and Sound at the University of Maryland, left the following comment:

Historically, it has always been parents that brought about change.  Parents were behind IDEA (Individuals with Disabilities Education Act, a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children) behind all the change in service delivery for autism, and the list goes on….

Not that you as parents need one more responsibility, but that is where the power is in special education.

Think about it.

In the not too distant past, children with special needs were not educated in schools.  They were not educated, period.  Parents were encouraged to “put away” their children and to continue with their lives.  “Throw away” is more like it if you look at the soul crushing history of institutions in America.

Parents went against the advice of medical experts and brought their children home.  Parents came together and began programs to teach their children.  Parents approached their legislators demanding that their children had the same right to a free and appropriate education as any other child.

We are the power that made special education happen. 

The fact that we have an IDEA to refer to and resources to look for (even if they are hard to find) is because of the parents who came before us.

Here’s what we, as parents of children with vision loss, need to understand as we blaze our trail.

Children with vision loss are considered a “low incidence” population. 

If you have had any experience trying to get a teacher with expertise in CVI in a public school district, you have learned that it is a challenge to get attention (and resources, funding, staffing…) for your child with this “low incidence” diagnosis.  You may find yourself in an IEP meeting or sitting across from a school administrator and hear those words “low incidence.”  Then, you may find yourself walking out of the meeting without getting anything you requested because “low incidence.”

Can I just say how much I dislike the term “low incidence”?

Some school systems and state legislatures have a tendency to forget that these populations of children need resources and funding too.

Here are a couple of thoughts I have about this.

#1.  There is no comprehensive, national system of data collection keeping track of children with CVI.  Some states have “soft” systems like a registry of children with certain medical diagnoses, but, doctors and hospitals are not required to use it.  Also, many state registries do not list Cortical Visual Impairment (or other pediatric visual impairments).

How can you keep track of a diagnosis if it is not even a box you can check off?

To school systems and state and federal funding streams, CVI is a low incidence population within a low incidence population.  Read: lowest possible priority.

But, if no one is counting, no one really knows the true number of children with Cortical Visual Impairment.  Often, children with CVI get put in a category called “multiple disabilities” and the vision loss goes unrecorded.

So, “low incidence,” my Aunt Fanny.  If you aren’t counting, then I call foul.

Remember, it is common knowledge that CVI is the #1 pediatric visual impairment in developed countries.

#2.   If children with vision loss are a low incidence population, then, to be heard, we, the parents, have to be loud, focused, and repetitive.  (Jessica M. said in her Moms on Monday post that she had become “a broken record.”  That’s what I feel like too.)

We need to start talking, often and loudly to certain groups of professionals.

We need to talk to teacher training programs to tell them we need more teachers who have been trained to work with children with CVI.

We need to talk to ophthalmologists to get CVI identified early and accurately.

We need to talk to legislators to change existing laws to require more specialized training (The Cogswell Macy Act needs your support!.)

We live in a world of constant distractions.  It is hard to get people galvanized around a single issue.

As you read this sentence, you have received 10 new posts on Facebook, 3 tweets, 15 emails, a few texts, your dog is pacing by the door in need of a walk, your child needs a new diaper, and your boss wants that report yesterday.  Am I wrong?

Every waking minute it seems as though we are bombarded with a parade of worthy causes and the resulting impulse to respond to them.

How can we start highlighting our worthy cause in today’s frantic world of modern media?

Here is something old school I’m doing every chance I get because something has GOT to give.

Talk to future teachers

From my experience, folks do not become special educators and/or teachers of the visually impaired to get rich quick.  They have a genuine desire to improve the lives of very vulnerable children.  They work hard.  There are not enough of them.  They may not have access to enough resources to do what they want to do in their classroom.

They care.

Wherever I live, I reach out to the special education department of the local university. In Bloomington, Indiana, I spoke to special education students in Dr. Melissa Keller’s class at Indiana University.  In Maryland, I spoke to students in Dr. Sandra Newcomb’s class.

Most recently, in Virginia, I reached out to Dr. Kim Avila, the head of the Visual Impairment Consortium, at George Mason University.  She has been kind enough to allow me to speak to her class of future teachers of the visually impaired for 2 years in a row.

On Monday, I joined a conference call to speak to this year’s group of future TVI on the first day of their unit on Cortical Visual Impairment.  The course is offered as online learning.  One of the students lives in Alaska and was compelled to become a TVI because of the number of children she is seeing in Early Intervention with CVI.  (She is my new hero.)

I told them about E, where she began and where she is now.  I told them about how challenging it has been to find teachers who had heard about Cortical Visual Impairment or what to do to help children with CVI learn.  I told them that teacher preparation programs for TVI do not typically include Cortical Visual Impairment in their curricula.

Then, I mentioned the Perkins-Roman CVI Range Endorsement.   I asked them to consider becoming endorsed because they will have children with CVI on their caseload and they need to be prepared for them.

Because, why not?  How is anything going to change if we do not start asking for things to change?  We have to start a conversation to raise awareness.  If these future teachers do not know that they will experience children with CVI in their classrooms, then they will not know to look for specialized training.

To seal the deal, I offered a homemade pie to anyone in the class who becomes CVI endorsed.

Even to the lovely lady in Alaska.

I would gladly freeze dry and Fed Ex a pie to Alaska, to the North Pole even, if it would increase the number of teachers who can help children with CVI have access to their environment.  So far, no one has taken me up on it.

But, the offer stands.

I do not kid about pie.

Future educators need to hear your experiences.  And, their professors would love to have your input in their classes.  You could research special education classes or TVI preparation classes at a university near you.  You could write a professor and say, “Hey, I’m the parent of a child with Cortical Visual Impairment.  I would love the chance to share our experiences with your class.”

If you do, tell CVI Momifesto how it went!

There might be a pie in it for you.









Ok, CVI Moms, Where do we start? TEAMS and Trailblazing

It dawned on me recently that CVI is bigger than I am.

In most of my research to understand what needs to happen at my daughter’s school so she will have ACCESS to her learning environment and will be taught by people who understand the effect CVI has on a child’s development, I keep running across the same word.


There’s a lot to say around this.  So, let’s start with a great resource for moms who do not know where to start.   The American Printing House (APH) for the Blind has a great resource page on CVI for parents, teachers, and anyone who wants to learn more about the history of this condition and the ongoing efforts to improve services for children.  There is a link called TEAMING that can help you get an idea about what your child’s team should look like.  This page is under TEAMING.  It describes a Daily Routines Matrix that give you a foundation to start from when working with your child’s team to make the activities of the day accessible.   My only comment on this page is that when it refers to your vision teacher or your TVI, I would replace this with CVI Endorsed Teacher (preferably CVI Endorsed TVI, but, there are plenty of OTs, PTs, and other professionals becoming endorsed).  


this is important,

at the meeting with the team you are putting together,

(because you are the mom and you are the quarterback of this team and they need to take you seriously because IDEA

IDEA. The Individuals with Disabilities Education Act, for the uninitiated.  If you are reading this, you are definitely initiated.

Welcome to our club!  Your membership includes a complementary glow-in-the-dark decoder ring, a box of tissues, a supersize box of chocolate, and a gallon jar of aspirin to be delivered by Ryan Gosling, a mid-70’s Paul Newman, Beyonce, or the fantasy delivery person of your choice.) 

Sorry, I got carried away – where was I?

Oh yes, at the meeting with the team you are putting together, you have every right to request a CVI Endorsed teacher.  

It will sound weird.

You may be the first person in your school, county, state to do so. 

There will be an awkward pause. 

They will look at you funny.  

When they do, you will wonder whether or not you are

1. crazy 


2. asking too much. 

You are neither.  

You are fighting for your child’s quality of life.  And, if that is not understood in your IEP, if you are not supported by the educational powers-that-be, then, hear it from me.

You are not asking too much.  You are not crazy.

You are blazing a trail for your child and for other children.

I was the first person to ask for a CVI Endorsed Teacher in my girl’s school.  We are still hammering out just what that means and what her team is supposed to look like, because we are learning this in real time.  We are setting the precedents. 

I was not the first person to ask for a CVI Endorsed Teacher in my county or state though.  There are some kickass moms here who started this fight before I got here.

There are moms asking the same questions and beginning to ask for CVI Endorsed teachers all over the country.  You can see it on the comments and questions on FB pages.

Remember: When you are thinking about your child in school, she will need a TEAM of people who understand CVI.  You are a critical part of this TEAM. The concept of a team and the amount of training, mentoring, planning, and preparing of materials necessary for many children with CVI is a brand new idea to schools.

They will NOT accept it after hearing it from you the first time.  They just will not.

We are asking them for more resources and more funding than they have budgeted.  They do not understand why these modifications are so important.

So, we learn what our children need.  We learn to be very specific.  We have to prepare ourselves.  All the while, we are educating our schools, our principals, our teachers of the visually impaired.  We are teaching them about preparation, determination, hard work and hope.

In addition to being a CVI Mom and all of the hats that job includes, add the Pith helmet of a trailblazer to the list.

Pith helmetAnd, if I do say so myself, it looks spectacular on you.





Momifesto: A definition


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,


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)