If you have found CVI Momifesto, you are likely searching for resources for a child you love or work with who has been identified as having 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.
And, as the mother of an 12-year-old girl with CVI and other diagnoses, I still do.
Despite years of research and discussion about Cortical Visual Impairment, 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 see in the posts of new parents the same anxiety and frustration I have been experiencing from preschool to 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 to be organized and vocal.
It would help if we could agree on some common issues. Hey, 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 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 vision loss problem instead
and on and on.
I see you. 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 trying to raise awareness about CVI on their own. After 12 years, I see that doing it on our own is not working as quickly or as well as we need it to.
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.
Because let’s face 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? (Apologies to Mr. Merriam and Mr. Webster)
CVI 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
- Children born 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.
- Once diagnosed with CVI, children need to be referred quickly 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 first world countries.
- 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.
CVI affects my daughter’s access to her environment.
I need to help her access the world around her.
Like every parent, I want her to be as independent as she can be. I want her to be able to communicate with others. I want her to be safe. I want her to experience joy. I want her to know she is loved.
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.