“Intervention must be driven by intention, not by materials.” – Christine Roman, 2018
“Intervention must be driven by intention”
Think about your own adult reading behaviors. Think about the range of choices of materials you have to choose from. Sometimes you pick materials based on length, sometimes on size of text, amount of pictures, subject and a range of other factors. You pick and choose, driven by goals and tempered by your energy and motivation. Continue reading ““Intervention must be driven by intention, not by materials””→
When you are raising a child who has cortical visual impairment (CVI) – words matter. Until a few years ago, using a public restroom with my son was “no big deal.” Then one day we were waiting to use the womens’ bathroom. My son has a disability and, like other moms with young kids, we often use the disabled or “big” stall. This time the “big” stall was taken so we chose a “regular” one and that is when I made a critical mistake that haunts me to this day and said – “Let’s SQUEEZE in!” as we tried to make our way through the narrow metal door. It was the wrong choice of words, “NOOOOOOOOOOOOOO!!!!! NO SQUEEZE IN!!!” Jasper screamed, covering his ears, in a sudden state of pure panic, his body rigid and shaky. Not only did I need to use the bathroom myself but now had to calm my son over some kind of terror that I could not even see, let alone know how to fix. Continue reading “In the bathroom with my son who has CVI”→
Here is a list of apps that we like for Phase III CVI, and why. Keep in mind, sound can always be turned down or off. Even kids in Phase III can be sound averse, and looking and listening can still be a challenge. Continue reading “Apps we like for Phase III CVI”→
Going to birthday parties is a childhood rite of passage. When you have a kid with cortical visual impairment (CVI), invitations bring a mix of anticipation and dread. Anticipation because you want your child to be included in the first place – just like all the other kids. And dread because celebrations, events, gatherings, parties are a delicate balance for kids with CVI. Birthday parties can involve some of the most challenging characteristics of cortical visual impairment – a party in a new environment (novelty), lots of kids (complexity, difficulty with faces, complexity of array), and energetic little bodies (latency, movement). Add the sounds of a bunch of excited kids and you have one Complex sensory environment. (Roman-Lantzy) Birthdays are a perfect storm for a CVI meltdown. Continue reading “Birthday party”→
As parents we hear all kinds of inappropriate comments about our children who have cortical visual impairment (CVI). Some of the most common ones reported by parents:
“Vision is the least of her problems.”
“You wouldn’t know there is anything wrong with him.”
“She looks like she can see.”
“What does he SEE??” (a personal favorite)
One of our all time best comments came from a preschool special education teacher, in response to my advocating for materials to be modified for my son with CVI, to give him visual access: “We are preparing these kids for kindergarten, we need all the materials to look the same.” Neither the teacher of the visually impaired (TVI) or the orientation and mobility specialist (O&M) said a word.
Then there is the multitude of comments around Autism. People, ordinary everyday people who “diagnose” your child with Autism. Parents of kids with Autism who “understand” your experience with your child who has CVI. This is in addition to providers who regularly offer you an Autism assessment, just in case you want to access “more services.” As if feeding therapy, neurology, occupational therapy, ophthalmology, physical therapy, speech language services and everything else you do for your child was not enough. Most all providers have heard of Autism and can tell you something about it. Those same providers then get tripped up on the words, cortical visual impairment.
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