Momifesto: A definition

Welcome!

If you have found CVI Momifesto, you are likely searching for resources for a child you love or work with 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.  And, as the mother of an 11-year-old girl with CVI and other diagnoses, I still do.

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 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 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 trying to raise awareness about CVI on their own.  After 11 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.  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)

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.
  • Once diagnosed 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)

 

 

 

Published by

CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

8 thoughts on “Momifesto: A definition

  1. I’m delighted to find your site as parents are the driving force behind seeking services for their child with a disability. Congratulations and wishing you the best success with your website.
    I was reading your Mom Manifesto statement and you mentioned CVI Endorsed professionals repeatedly in your description. However, in one section you stated you were not referring to a Teacher for the Visually Impaired. As a TVI with a CVI Proficiency Endorsement through Dr. Christine Roman’s program I wanted to understand your thoughts on TVI’s as it appeared you were not recommending them as a person who is CVI Endorsed.
    Could you clarify for me as their may be some mis-information out there as to the qualifications of a Teacher for the Visually Impaired working with children with CVi.
    I look forward to speaking to you further!
    Deborah Bruening, TVI, CVI Proficiency Endorsement

    Liked by 1 person

    1. Hi Deborah,

      Thank you so much for taking the time to respond. I applaud you for receiving your endorsement.

      You touch on a critical challenge facing families of children with a CVI diagnosis.

      Simply put, TVIs with a CVI Endorsement like you are hard to find!

      I will go into further detail in another post because the situation is far from simple and services vary widely depending upon where you live.
      Everyone who works with and cares about children with CVI needs to understand that there are real challenges in finding teachers and therapists with a thorough understanding of, and extensive training in CVI.

      And, it’s complicated.
      Here are some of the complicating factors:

      The systems of service for children birth to 3, and 3 to 22 vary widely state to state – even county to county, or city to city.

      There is a national shortage of TVIs. The majority of TVIs in America today have been taught about ocular impairments. They have been taught very little, if anything, about CVI.

      Many families of children with CVI do not have access to a TVI in their state’s Early Intervention system. If they do receive services of a TVI, it may be once a month, once a quarter, or once a year, depending on state budget constraints and lack of TVIs. If they do receive services from a TVI, it is highly likely the TVI is not trained (endorsed) in CVI.

      Current training programs for Teachers of the Visually Impaired do not adequately prepare new TVIs to serve children with CVI.
      I believe Dr. Roman mentioned that Ellen Mazel is working with the TVI program at UMass to add training on CVI. That is one program. There may be others. I’m curious to learn if there are. If not, we certainly need more.

      I absolutely agree that a TVI with a CVI Endorsement would be exceptionally qualified to provide services to a child with this complex diagnosis. We just need more of them.

      Until then, I tend to follow Dr. Roman’s line of reasoning that professionals from other disciplines, such as Occupational Therapy and Physical Therapy, can provide effective support for CVI (CVI Range, accommodations and modifications, family support) if they have become CVI Endorsed professionals.

      My point, in emphasizing finding a “CVI Endorsed provider, ” was to toss out the assumption many new parents (and some TVIs) make that a Teacher of the Visually Impaired is automatically equipped to work with children with CVI.
      That is just not true. Would you agree?

      I look forward to hearing your thoughts!

      Thank you for your dedication and interest,
      Rebecca Davis
      CVI Momifesto

      Like

      1. Rebecca,
        Quite simply all the reasons and issues you listed regarding CVI are exactly why I decided to go through the Endorsement program. It is up to all of us, especially professionals to educate the medical field, the ECI population and everyone within the district who works with a child with CVI to do it correctly and to do it with passion! My best to you in your endeavors. If I can be of assistance please don’t hesitate to contact me:)
        Deborah

        Liked by 1 person

    2. P.S. I just remembered and wanted to mention that I offered to bake a pie to anyone in the George Mason TVI program who also went for their CVI endorsement. We’ll see how that works. I’m open to other ideas.

      Like

  2. As a TVI, I have been frustrated with my colleagues in service to students with CVI. This information about CVI has been around for years now and many, many TVI do not understand CVI, do not use the correct functional vision assessment for these students and do not know how to program plan for students with CVI. They use ocular information and assessment which is totally inappropriate for students with CVI. They “consult” once per month and call this service to children. Universities training TVIs rarely discuss CVI yet the students leave to have 60%-80% of their caseloads filled with students with CVI. My face to face 3 day classes about CVI are always filled with parents, classroom teachers, and therapists who are not getting any help from the TVI for the students they serve. Major adjustments in TVI teacher training is needed. Endorsement must be mandatory as a baseline skill before ever serving students. In a perfect world, all TVIs would be knowledgeable and endorsed but kids can’t wait.

    Liked by 1 person

    1. Thank you for joining the conversation and sharing your perspective, Ellen. You are at the forefront of the attempt to raise awareness about CVI and to train more teachers. I am so grateful for your blog. I share your frustration. I hope that our CVI community can be instrumental in getting the changes needed to university program for Teachers of the Visually Impaired. You are so very right. Kids can’t wait.

      Like

  3. Ellen,
    I recently received my CVI Endorsement through the ePerkins Learning program. I am an avid supporter of the cause to educate TVI’s, teachers, administrators and other related services personnel about children with CVI. Most importantly, to educate opthalmologists and neurologists. I recently saw a neurosurgeon for some spinal issues and mentioned what I do and the CVI program I was in. Actually, I mentioned the word neuroplasticity and he almost fell off his stool and wanted to know how I knew that word and the meaning behind it. Bottom line, he asked me to come and speak to some of his interns on the subject of Cortical Visual Impairment because they do not receive any training on the topic. I declined because of the intimidation factor! but he assured me it would be 4-5 students at a time only. It’s a foot in the door, to say the least and I’m blessed to have that opportunity. I would love to converse with you privately sometime as you have such a wealth f knowledge and are such a leader in the field. Best to you!
    Deborah Bruening, CTVI, CVI Specialist

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s