A School District Tackles CVI – Fairfax County Public Schools

Hello fellow families of lovable children who happen to have cortical visual impairment,

In a previous post, I mentioned that, across the United States, more parents are educating themselves about their child’s diagnosis of CVI.  They are taking their research into their IFSP and IEP meetings. They are asking their school districts how a child with CVI will be accommodated in the classroom.

Parents receive a wide spectrum of responses to their questions.

(And, I hammered this home with a tortured analogy from West Side Story.   Sometimes I have to make sense of things through musical theater.  Everyone has their thing.  Don’t judge. 

west side story pairImage:  Tony and Maria from West Side Story singing Somewhere (technically she’s lip-synching) 

There’s a place for us….children with CVI to be educated in the manner in which they can learn because they can learn…..SOMEWHERE a place for ….children with CVI.  Aren’t you glad I didn’t dredge that up again?)

As a direct result of the advocacy of parents in their individual IEP meetings, some school districts in America are recognizing CVI as a common diagnosis (#1 pediatric visual impairment –  Can’t miss an opportunity to throw that in.)  and as an obstacle to a child’s access (our favorite word) to a Free and Appropriate Public Education.  In fighting for their own children, these parents are improving education for all of our children.  It does not happen overnight, but there has been significant progress since I began looking for like-minded parents a decade ago.

It’s important for families to know that there are school and district administrators who are open to listening and to learning.

(There is a troubling issue with special education administrators.  Did you know that special education administrators do not have to have a background in special education to hold their positions?  Special education is a term which covers a wide variety of diagnoses and educational approaches. One would think that an administrator in this field would need more expertise to represent the students in their district, definitely not less. When I learned this, I wondered if this isn’t one of the reasons so many families feel like they are hitting a brick wall when they ask for teachers and staff to be trained in educating children with CVI.  Something to consider.)

Kudos to the administrators who acknowledge the challenge of educating children with CVI and who take action to train their staff.  This is new territory. They are leading by example.

Speaking of examples, Fairfax County Public Schools, the largest public school system in Virginia, has made a significant commitment to training teachers about cortical visual impairment through the Perkins-Roman CVI Range Endorsement.  

Dr. Irene Meier is the Director of the Office of Special Education Instruction for FCPS.  Two years ago, when parents met with Dr. Meier to give her information about cortical visual impairment and its impact on student learning, she was curious to learn more.  She recognized the need for specialized training to work more effectively with children with CVI.  She and Dr. David Lojkovic, Educational Specialist for Adapted Curriculum, worked with Perkins to provide FCPS teachers training through the Endorsement program.

When recently asked about the training, Dr. Meier responded:

“Our collaboration with Perkins and the feedback from the teachers was a very positive experience. We plan to continue to offer access to these courses next school year.
Over the course of the past two years, FCPS has been fortunate to participate in training, provided by the Perkins School for the Blind, that has advanced the skills of our staff who are working with students with cortical visual impairment (CVI). 21 FCPS teachers have taken either graduate level or advanced level courses, with several in that cohort pursuing the specialized endorsement in cortical visual impairment.

The feedback from teachers has been extremely positive.
Participant quotes: “I like taking Perkins’ classes because they’re structured, but flexible.”
“The assignments are challenging, but not too challenging.”
“The work we do in the classes can be directly applied to practice.”
Survey results show that teachers appreciate the opportunity to learn more about assessment with the CVI range and have used skills learned from the coursework with students that they serve. Furthermore, teachers indicated via survey that they were engaged in the coursework and felt encouraged to try strategies learned.
85% of participants in the coursework indicated that they learned new information as a result of taking the course.”


Image:  A pith helmet

For her willingness to address the challenges of educating children with cortical visual impairment, CVI Momifesto would like to offer Dr. Irene Meier our first honorary Pith Helmet of Gratitude for helping parents of children with CVI forge a new path, blaze a new trail, if you will, in special education.

So, fellow parents –

if your child has been identified with cortical visual impairment and you are getting a lot of pushback from your school district when you ask for accommodations, modifications, and educators trained in CVI,

if hours of IEP meetings have worn you down so that you start to doubt yourself,

if you start to wonder if your request for your child to have access to her education is even possible,

remember that there are school districts, there are administrators, there are teachers who get it.  They are working with parents.  They are learning how to work with our children.

A question you may ask your school district might be, if Fairfax County can do it, why can’t we?


P.S. If you know of a school or a district that has risen to the challenge of working with children with CVI, let us know at Info@cvimomifesto.com so we can spread the word!




“What if Christmas…perhaps…means a little bit more!”

Good morning fellow families of adorable children who happen to have CVI,

This post is about gratitude for people who made my Grinch’s small heart grow at least 3 times this year.  (It’s just not the holiday season until someone quotes the Grinch.  You’re welcome.)

1. Javier

He is the kindest bus aide I have ever seen.  (And, believe me, I watch.) He does not know I am writing this, so I will call him “Javier.”  Javier greets us every morning with a big smile. He gallantly offers her his hand as they count the bus stairs together.  He asks her permission to help her scoot over and tells her when he is putting her bus belt on.  Eliza smiles when she hears his voice.  She takes his hand without any reservation.  She knows she is safe with him.  Because of this, I would offer this man a kidney without any reservations whatsoever.

Javier has seen me in the most mismatched excuses for sleepwear/sportswear as I roll out her chair every morning.  The man has never seen my hair brushed, folks.  He has also chided me for going out in the cold without a coat. In the rush of the morning routine, I hadn’t realized I needed one.  My mother would have approved.

Here’s the thing that GOT me.  One day, as Javier lowered the ramp to load her wheelchair, I noticed he was wearing a suit and dress shoes.  I thought maybe he had a job interview or a court appointment.   I didn’t think anymore about it, until a week later, when he wore another suit and tie.  I complimented his outfit again. He smiled, a little embarrassed by my effusiveness.

I realized the suit was a regular sort of thing, so I complimented him again the next week.

Javier shrugged and smiled.  “I just want to look professional.”

Shivering in front of our house, wearing mismatched socks, grubby sweatpants, and my husband’s t-shirt, I took that in.

I remembered one morning early this year when I went to Eliza’s school to watch how the bus transition was working.  Another bus carrying children with special needs was in line before Eliza’s bus.  The driver opened the door and came down the stairs to unload the equipment.

That guy wore a t-shirt that said – well, how do I put this?  The shirt had the emoji that most resembles chocolate soft serve (if you get my meaning) and it said “@#*t happens.”

What kind of message does a shirt like that send to the children and their families? And, to the other students?

Scowling, I watched “Mr. Soft Serve” lower two very complicated kids in wheelchairs to the ground without a word or a touch.  He transferred the boys like he was delivering boxes for UPS.

When Javier told me, a little sheepishly, “I just want to look professional,”  I realized the effort he put in to look his best for my girl and, I suppose, for me.

I had a sudden urge to hug this man and to make him president of the universe.  I did neither, since a restraining order from our local school system is one headache I do not need.  They already think I am weird enough.


2.  5th graders rule the world

Eliza attends morning meeting at a 5th grade classroom in her school.  She goes in with an aide and her IPad or a Big Mack button to answer questions.

She also goes in with the widest smile I have ever seen on her face.

The students have welcomed her.  They call her by name when she comes in to see them and when they see her in the hallway.

Earlier in the semester, their teacher, Mr. K, and the principal allowed me to give a brief presentation to this class.  I talked about her diagnoses, especially CVI.  I asked them to identify themselves when they greet her because she has a hard time identifying people – even people she knows. I explained that she has difficulty with depth perception so she may walk unevenly and she might need to hold someone’s hand.   I told them it is a challenge for her to take in too much information – visual and auditory – at the same time.  I asked them to be patient with her and to understand that she can understand them, but that she needs more time.

Eliza’s teacher has been instrumental in scheduling the time necessary for these vital moments of social education for her.

This week, she sent me a few pictures of Eliza and some of the 5th graders outside during a break.  They were walking with her, holding her hand.

These are the first pictures anyone has ever given me of Eliza hanging out with a child who is not her own sister.  So, there’s that.  Where ARE the tissues when you need them?

Ifyou read an earlier post, you may remember that 3 of the girls have come up with a project to make a communication device for Eliza.  They prepared a PowerPoint for Eliza’s teacher who sent it to me.

The girls met with us to try different materials for the switches.  They showed me, um,  wires and things, and there was a laptop involved… ok!  I don’t get this stuff!

As I sat there and tried to understand the technology speak coming out of their mouths, I realized

  1. They will be leaders some day. 
  2. Their compassion and their technological expertise will create new opportunities for children like Eliza. 

Last week, they presented their project to the PTA who agreed to fund the materials needed to make this device.  

They met a kid.  They were curious.

They saw a problem.  They came up with a solution.

They found a way to make it happen.

We will see what happens next after winter break.  I am looking forward to learning from these young ladies who are as kind as they are intelligent.

Yes, when 5th graders rule with world, we will all be just fine.

hands together

Here’s to the people who are gifts in our lives.

They brighten our days just by caring and extending a hand.