“Does the mailman know Santa?”

Does the mailman know Santa?
“Does the mailman know Santa?”

As parents, and especially as parents of children who have cortical visual impairment (CVI), we worry about many things. One of the things we worry about most is knowing that our child’s unique educational needs are not being met and supported. In those first years, that critical period of neurodevelopment, parents work hard to get a CVI diagnosis, a CVI Range assessment (Roman-Lantzy), and improve their child’s use of functional vision. We become fluent in the language of CVI. We color highlight, strictly adhere to complexity of array, and speak in salient features. Only to hand our child off when it comes time for transition to public school, and our well honed educational approaches fall by the wayside. Worksheets are highlighted in anything but preferred color yellow. Reading materials are simply enlarged instead of modified. The silhouettes of abstract black and white line drawings are quickly highlighted in whatever color marker was handy. We spend our time arguing with school district administrators about the need to include salient features and comparative language in the IEP (Roman). And the critical question to my son’s learning, What do you see? goes unasked, day after day, for the entire school calendar. Continue reading ““Does the mailman know Santa?””

CVI salient features books

CVI salient features books
CVI salient features books

When my son who has cortical visual impairment (CVI) was in preschool, it was important that he had visually accessible books. Most of the books in his classroom were filled with bright, multicolored, visually complex illustrations (complexity, Roman). Bright Baby makes a series of books that uses realistic photographic images and plain, solid color backgrounds. The books are inexpensive, easy to modify, and are one of the few items that CVI parents do not have to make themselves from scratch. Continue reading “CVI salient features books”

What to include in an IEP for a student who has CVI

What to include in an IEP for a student who has CVI
What to include in an IEP for a student who has CVI
With the help of TVI Matt Tietjen*, we have compiled a list of considerations when writing an Individualized Education Program (IEP) for a student who has cortical visual impairment (CVI). IEPs look different from state to state, but contain the same information. If you are a parent or a provider who works with a child with CVI, no matter where you live, here are some ideas to think about. It should be noted that our source for all discussion of CVI, the phases, the ten characteristics, accommodations and modifications is Cortical Visual Impairment: An Approach to Assessment and Intervention (2007, AFB Press) by Christine Roman-Lantzy. Continue reading “What to include in an IEP for a student who has CVI”

“Words can be more stable than pictures”

"Words can be more stable than pictures"  "For children with CVI, words can be more stable than pictures." This was another piece of CVI wisdom from Christine Roman-Lantzy that this CVI mom had heard repeatedly, it seemed, these last few months. But it was at our ophthalmology appointment that it played out right before my eyes.  To say that cortical visual impairment is a complex diagnosis is an understatement. Along with CVI, we have amblyopia, astigmatism, hemianopsia, myopia, nystagmus, strabismus, and most recently, anisometropia. While some of these can be considered ocular impairments, they are also intrinsically tied to CVI, or at least to the brain injury and damage that resulted in my son's cortical visual impairment. Anisometropia, by its simplest definition, is a difference in acuity between the two eyes. When it comes to my son's vision, even acuity is imperfect. The problem became apparent when Jasper started covering his left eye whenever he looked at...anything. The parent-teacher solution was to tell him to stop doing this - but our kids' behavior has meaning and purpose. So instead of covering that left eye, Jasper began shutting it whenever he looked at...anything. Because the left eye is weaker - the stroke that damaged his occipital lobes was greater on the right than the left - he had come to rely on the right eye, creating an imbalance in his acuity. Use it or lose it.  Ever since the diagnosis of anisometropia two years ago, we follow up with the ophthalmologist every four months. Well aware of the complexity of my son's vision, that acuity test hits hard every time. Lea Symbols are commonly used to test the distance acuity of children beginning at age 2 1/2. The four symbols are a circle, apple, square, house. For a child with CVI, it seems fair to review the symbol shapes prior to the test. Circle, square...is that another square? No, it is similar to square on the bottom but is pointy on top, with edges that point down, like the roof of a house, it must be a house. And is that another circle? It is circular but curves in at the top and bottom, similar to an apple, how it curves at the top where the stem is, that must be an apple. But this is not what happens and my son, who loves going to the ophthalmologist, struggles in the exam chair from 25 feet away to distinguish the salient features of the house and the apple. Each time, the same thing. He might get one or two correct.  Except last time. Jasper is now six years old, beginning first grade. The doctor's assistant asks, Does he know the alphabet? Yes - yes!! And instead of Lea symbols, letters appear on the screen across the dimly lit room. Holding my breath, Jasper reads off the letters. Still imperfect, but this time he is able to identify almost all of the letters. Instead of only one or two correct, he misses two or three. It is amazing and by far the best he has ever performed on a distance acuity test.  "For children with CVI, words can be more stable than pictures." Stunned, the words came to me almost immediately afterward, and I jot them down just as the doctor arrives to finish the exam. Comparing Jasper's struggle with abstract pictures versus plain old letters, forces a kind of acceptance. As the parent of a child who has CVI, you see that struggle every day. Reading those letters feels less like a struggle and more like an accomplishment and we will take that and run with it.
“Words can be more stable than pictures”

“For children with CVI, words can be more stable than pictures.” These were the words of Christine Roman-Lantzy that this CVI mom had heard repeatedly, it seemed, this last year. But it was at our ophthalmology appointment that it played out right before my eyes. Continue reading ““Words can be more stable than pictures””