Ok, CVI Moms, Where do we start? TEAMS and Trailblazing

It dawned on me recently that CVI is bigger than I am.

In most of my research to understand what needs to happen at my daughter’s school so she will have ACCESS to her learning environment and will be taught by people who understand the effect CVI has on a child’s development, I keep running across the same word.

TEAM 

There’s a lot to say around this.  So, let’s start with a great resource for moms who do not know where to start.

http://tech.aph.org/cvi   The American Printing House (APH) for the Blind has a great resource page on CVI for parents, teachers, and anyone who wants to learn more about the history of this condition and the ongoing efforts to improve services for children.  There is a link called TEAMING that can help you get an idea about what your child’s team should look like.

http://tech.aph.org/cvi/?page_id=352  This page is under TEAMING.  It describes a Daily Routines Matrix that give you a foundation to start from when working with your child’s team to make the activities of the day accessible.   My only comment on this page is that when it refers to your vision teacher or your TVI, I would replace this with CVI Endorsed Teacher (preferably CVI Endorsed TVI, but, there are plenty of OTs, PTs, and other professionals becoming endorsed).  

AND,

this is important,

at the meeting with the team you are putting together,

(because you are the mom and you are the quarterback of this team and they need to take you seriously because IDEA

IDEA. The Individuals with Disabilities Education Act, for the uninitiated.  If you are reading this, you are definitely initiated.

Welcome to our club!  Your membership includes a complementary glow-in-the-dark decoder ring, a box of tissues, a supersize box of chocolate, and a gallon jar of aspirin to be delivered by Ryan Gosling, a mid-70’s Paul Newman, Beyonce, or the fantasy delivery person of your choice.) 

Sorry, I got carried away – where was I?

Oh yes, 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 

or

2. asking too much. 

You are neither.  

You are fighting for your child’s quality of life.  And, if that is not understood in your IEP, if you are not supported by the educational powers-that-be, then, hear it from me.

You are not asking too much.  You are not crazy.

You are blazing a trail for your child and for other children.

I was the first person to ask for a CVI Endorsed Teacher in my girl’s school.  We are still hammering out just what that means and what her team is supposed to look like, because we are learning this in real time.  We are setting the precedents. 

I was not the first person to ask for a CVI Endorsed Teacher in my county or state though.  There are some kickass moms here who started this fight before I got here.

There are moms asking the same questions and beginning to ask for CVI Endorsed teachers all over the country.  You can see it on the comments and questions on FB pages.

Remember: When you are thinking about your child in school, she will need a TEAM of people who understand CVI.  You are a critical part of this TEAM. The concept of a team and the amount of training, mentoring, planning, and preparing of materials necessary for many children with CVI is a brand new idea to schools.

They will NOT accept it after hearing it from you the first time.  They just will not.

We are asking them for more resources and more funding than they have budgeted.  They do not understand why these modifications are so important.

So, we learn what our children need.  We learn to be very specific.  We have to prepare ourselves.  All the while, we are educating our schools, our principals, our teachers of the visually impaired.  We are teaching them about preparation, determination, hard work and hope.

In addition to being a CVI Mom and all of the hats that job includes, add the Pith helmet of a trailblazer to the list.

Pith helmetAnd, if I do say so myself, it looks spectacular on you.

 

 

 

 

Published by

CVI Momifesto

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

2 thoughts on “Ok, CVI Moms, Where do we start? TEAMS and Trailblazing

  1. I am learning how to navigate this path right now. Perhaps you can shed some light on how to proceed: We had my child’s IEP last May and determined that he would attend the school for the blind’s preschool program. Over the summer, we moved to a neighboring school district. We held an IEP review where it was determined by the majority of the team that the new district’s preschool could meet my child’s needs because they offered a vision classroom. The big argument is that it was the Least Restrictive Environment to be in our neighborhood school. I had my reservations, but didn’t feel I had many options. It’s been almost a month and the more I am learning, the more I feel that we are doing my child a disservice.

    How do you go back and “renegotiate” things, like having a CVI endorsed teacher after you’ve had the annual meeting?

    Liked by 1 person

    1. Hi Christi, I have read this post a couple of times. I am sending out this question to a few of the experts in the field and some moms who have been more successful than I have. I will get back to you. Will probably post on the responses. Thank you for bringing up this valid, timely point.

      Like

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