This is the year we Start Seeing CVI

This is the year we Start Seeing CVI
This is the year we Start Seeing CVI

As the parent of a young child who has cortical visual impairment (CVI), I have explained my son’s diagnosis to countless providers. When I say providers, we are talking about early childhood educators and interventionists, neurologists, occupational therapists (OT), ophthalmologists, optometrists, orientation and mobility specialists (O&M), pediatricians, physical therapists, special educators, speech language pathologists, and especially teachers of the visually impaired (TVI). Because of the lack of awareness, education, and knowledge of CVI across the board, it has fallen to this CVI mom to educate everybody who works with my son. When you are a parent of a child with CVI, you spend every single day fighting for your child to receive appropriate services, an appropriate education, and access to the curriculum and the world. Continue reading “This is the year we Start Seeing CVI”

Return to Wonderland

Originally published November 12, 2013

Pittsburgh Zoo

In the weeks leading up to our October appointment with Christine Roman-Lantzy, I debated going. Jasper’s developmental Renaissance, which began in early summer, was still going. Global improvements in communication, speech, feeding, auditory processing, and vision. Another new mom once said to me, “My baby changes so much every day, he’s constantly learning something new!” At the time, Jasper was about a year old, and doing Ok, but the words struck me. Changes so much… every day?? I had no idea what that meant. My experience was different from that of other new moms. Continue reading “Return to Wonderland”

“Fire is so loud”

Guest blog post by Peggy Palmer, TVI*

Recently I had yet another conversation with a distraught parent from another state, who was upset that her child who has cortical visual impairment (CVI) was not being included in the story/circle time at preschool. “He doesn’t need to see the pictures,” the parent was told. Continue reading ““Fire is so loud””

Start Seeing CVI t-shirt

Start Seeing CVI
Start Seeing CVI t-shirts are now available for purchase. You can order kids sizes here, and grown up sizes here. Half of proceeds will benefit the Pediatric CVI Society.

The original t-shirt design, pictured at right, and on our Facebook page, can be ordered in kids sizes here. This design and the terms used to describe the ten characteristics reflected the then current language used around CVI, and comes from Cortical Visual Impairment: An Approach to Assessment and Intervention by Christine Roman-Lantzy.  The t-shirt idea, along with the name, Start Seeing CVI, was born out of a parent’s frustration from dealing with providers who had never heard of CVI, and the constant explanation of both my son, and his vision disability. This happened by the time he transitioned from birth to three services to the public school system. The t-shirt was made as he began preschool, with a new team that either did not know CVI at all, or did not know nearly enough. His new IEP team strongly recommended instruction in Braille, and this CVI mom declined. And I sent my son to school wearing his Start Seeing CVI t-shirt.

Start Seeing CVI. So that early childhood educators, occupational therapists, ophthalmologists, optometrists, orientation & mobility specialists, pediatricians, physical therapists, special educators, speech language pathologists, and teachers of the visually impaired can Start Seeing Cortical Visual Impairment.

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”