Over the past 11 years, and in no less than 5 different states, I have attended countless Individualized Family Support Plans (IFSPs) and Individualized Education Plans (IEPs). (Quite the fun fact about me. May make a great t-shirt.)
In every single one of these meetings, I have introduced the conversation about Cortical Visual Impairment and how it affects my daughter’s ability to learn. I introduced it. The mom.
I need to be clear that I have not yet been successful in getting her an educational environment that fits her unique learning needs, and, especially, her CVI. Believe me, I’ve tried. I’m still trying and I will share our efforts in future posts.
We are going into 6th grade now. The frustration and despair I feel, when I let myself think about how much time we have lost, is overwhelming.
Being overwhelmed is not going to change anything for her. Being overwhelmed is not going to improve the current state of education for children with CVI.
So, I have to do something different. I have to call it what it is: Schools are not prepared to teach children with CVI. I have to do something.
If moms do anything, we persevere, right? We ask a question on Facebook, or call yet another doctor, or get the latest book, or even, start a blog. Whatever it takes.
Sometimes it takes curling up in a fetal position in your closet for 3 days. Ahem. So I’m told.
My point is that I have always had to put CVI on the educational team’s radar. It doesn’t matter which state I’m living in. I have to bring it up. And, then, inevitably, I have to sit back and watch as I am assured by the Teacher of the Visually Impaired and her administrator that they have “got this.” “Not to worry.”
I know this is not the case because I am aware of the national shortage of Teachers of the Visually Impaired. I am also aware of the national shortage of TVI, teachers, and therapists with any expertise in CVI. I’ve been asking where the experts are for a decade now. We don’t have enough of them.
In our IEP, I will ask, “Do you have the CVI Range Endorsement through Perkins School for the Blind?”
I am met with blank stares. Crickets. Tumbleweeds.
Someone may say, “I took a workshop with Dr. Roman a few years back.” Or, “I saw Diane Sheline speak once.”
These are great beginnings to an understanding of working with children with CVI. Beginnings.
And then, in the IEP meeting, I begin the intricate dance of the mother of a kid with CVI. It goes a little something like this:
(Deep breath, remember to smile! Bring bagels. It’s show time!)
I ask what services are available and introduce what she needs according to the CVI Range and her present levels of progress (yes, the unfortunate acronym – PLOP),
(Maintain eye contact, keep smiling, shuffle, shuffle, hop step),
Explain – politely- but, through clenched teeth (The show must go on!) because I can’t believe I’m explaining why vision is important for learning
(Twirl, jazz hands, sunset arms),
I hand out the dozens of pages of resources on CVI I printed out, stapled and highlighted the night before for the teacher, the TVI, the principal, the therapists, the administrator, the AAC lady, the baker, and the candlestick maker
(one, two, three, one, two, three, cha-cha-cha, frantic tap solo)
TA DA! (Big flourish! We are all on the same page! It’s a new year! Cartwheels, sparklers…Go TEAM!)
E may be allotted 30 minutes/week.
If I push,
45 minutes/week of “vision time.”
“Vision time” as direct consultation, that is direct time between the Teacher of the Visually Impaired with my girl.
(Insert “WAH-WAH” noise here.)
And time continues to pass.
Another school year, another struggle to reach her, another group of people to convince that she can learn if she has access to her environment. If they believe in her.
Excuse me, I have to go find something in my closet.