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.









Trailblazing: How do I ask for/renegotiate a CVI Endorsed Teacher?Experts weigh in.

Hello fellow families of glorious children who happen to have CVI!

Remember this from the last blog post?

…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.

All of this is true.  Challenging your schools and your school systems to recognize and accommodate for CVI is advocating for your child’s quality of life. We are trailblazers.  Pith helmets are optional.

There was a comment after the post, asking for help renegotiating at an IEP for a CVI Endorsed Teacher.  I read the comment a few times.  I was out of my league.  I couldn’t make a dumb joke and tell everyone to “keep on keeping on.”

I have been trying to find the “right” answers to questions like this for years.  I find that each state is different, their systems of government are different and their school systems are different; you get my drift.

Living in a state in which your child has access to

-a diagnosis of CVI

-teachers who are CVI endorsed


-schools that recognize the unique needs of children with CVI is RARE.   

Every time my family moves to a new state, the prospect of unraveling the knotty problem of educating a child with vision loss lands at the top of my to-do list.  Who to talk to?  How much experience does the classroom teacher/TVI/aides have?  Has anyone ever heard the letters C,V and I put together before?  How does this state accommodate students with vision loss?  Some states do it better than others.  The list goes on  and on.

I am a parent advocate, but, I am not an expert in the IEP process.  Not even for my own kid.  I hope to be someday.

I am a parent who thinks this CVI situation needs to improve on a national scale.  I am learning and asking a lot of questions.

With this understood, I asked the question “How can I renegotiate for a CVI Endorsed teacher after already having the annual meeting?” with some experts in the field of education.

It is an important question for many families.  Thank you, Christi, for asking it.

There isn’t one answer to this question at this point in our journey.  But, here are the responses I got.

Many thanks to Dr. Julie Durando, Ellen Mazel, Peggy Palmer, and Dr. Christine Roman-Lantzy for their time and willingness to help CVI families navigate this bumpy terrain.

Julie Durando, Ed.D., Project Director, Virginia Project for Children and Young Adults with Deaf-Blindness – “The challenge of asking for a CVI Endorsed teacher on an IEP is that Virginia doesn’t recognize the endorsement in any official capacity.

Schools don’t really have a way to require teachers to get something that isn’t recognized as a Virginia certification or endorsement.

Even in the field of VI and Blindness, there is disagreement about which strategies are most effective.  This can make it confusing for administrators when experts in the field don’t agree.

I like to hope that professionals take personal responsibility to learn the skills needed to effectively do their jobs and serve kids well.

The shortage of teachers with VI certification does not make anyone at the state level eager to add stipulations to who can serve in this role.

This is no way unique to Virginia.

It is a national problem.”

Ellen Mazel, CVI Program Manager, Perkins School for the Blind –  “I always say the CVI Range is the only assessment with reliability to look at functional vision for a child with CVI.  The creator of that assessment (Dr. Christine Roman-Lantzy) determined that people need to prove competence in its use.

The steps to prove that competence begin with the Endorsement she has created.

There is no one doing an assessment of the Wilson Reading Program who has not gone through extensive training in it’s use.

There is no one doing many kinds of educational testing assessments without going through training.

The CVI Range is no different.”

Peggy Palmer, TVI –  “It’s a bit dicey, of course, to ask for a CVI Endorsed teacher after (I assume) the child already has a TVI.  However, I would go with the argument that with this brain based eye condition, the correct kind of strategies can have a dramatic effect on a child’s brain development.

A person who is CVI endorsed is able to correctly assess the child’s vision, prescribe the best strategies for vision development and provide ongoing assessments as the child’s vision changes.

We are not advocating for our children to make new friends.”

Dr. Christine Roman-Lantzy – “My thought would be to reopen the IEP and/or use the content of the IEP to support whether or not the CVI Range was used properly and that present levels, objectives, and accommodations are all incorporated and match the CVI Range Scale.”

This is what I’ve got so far.  It is good to have the insight of experts.  They can provide us with language that can sway school administrators.  Also, this insight can help you with your own advocate, or, as you prepare your own case for advocacy.

We are setting precedents.  Creating change is – like any act of creation – messy, chaotic, and fraught with folks who liked it better before you stuck your nose in it.

But, for children with CVI, where is the fun – the Free and Appropriate Public Education in that?