Welcome!

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,

however,

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)