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”

Access makes a world of difference

Go, Dog. Go! by P.D. Eastman

Thinking about visual access in terms of the arts can feel overwhelming. How can a child who has cortical visual impairment (CVI) possibly have access to and enjoyment of, an arts experience? On a recent outing to our local children’s theatre, it hit home how visual access makes a world difference for a child who has CVI.

My son attends a public school with an “arts emphasis.” In addition to the usual curriculum of math, reading, and science, there are dedicated classes to dance, music, and prolific visual art making. A few times a year, entire school days are devoted to creating art. The hallways are lined with ever changing exhibitions of student artwork, sending the visual complexity off the charts. It is no wonder that, as the hallway complexity increases, my son who is in Phase III CVI (Roman-Lantzy) visually hones in on the red lunch wagon permanently parked by his classroom door. “There’s the lunch wagon!” he squeals as we approach. Among the visual chaos, he made his own accommodation by finding a salient feature (red wagon) that helps him find his way (Roman).

When it comes to classes like dance and music, the CVI characteristics of complexity, distance and latency interfere with so much – recognizing faces near and far, interpreting body language, reading facial expressions, not to mention trying to follow along and visually attend amidst a complex sensory environment (Roman). Add difficulty with imitation, and these classes might seem off limits to a child who has CVI.

As part of this arts emphasis, the students sometimes attend local performances at a neighborhood playhouse. On these outings, my son is accompanied by an instructional aide. At the end of the day, her report on the performance is always the same: Jasper was not very interested. Each time, upon hearing this, my heart sinks. Without even trying, it is easy to imagine him looking around, tugging at his shirt or otherwise keeping his hands busy, wiggling his body, rolling around, moving. My son has seen and been attentive watching movies (a few in movie theatres), at a ballet, and the theatre, a play. “Not very interested” stumped me.

On a recent October weekend, we went to see Go, Dog. Go! at Seattle Children’s Theatre. Halfway through the performance, my son beaming and clapping and laughing and happy – it hit me. Comparing the two experiences – “not very interested” at a play with his class, or having the time of his life watching Go, Dog. Go! – what was missing was visual access.

This was Jasper’s second time seeing a performance at Seattle Children’s Theatre. The first was The Cat in the Hat, by Dr Suess. A few years ago, this had been one of Jasper’s favorite books, he could recite the entire story to you. That experience, which is also about literacy, deserves its own future blog post.

While The Cat in the Hat was about rote memorization, Go, Dog. Go! was a book that Jasper could read on his own. We read it together several times. We looked at and talked about each picture (against a plain white background). In the week leading up to the play, we read the book every day.

Dogs are a meaningful subject. My son is afraid of dogs, so we talk about them, in an attempt to demystify them. We study the salient features (Roman) of different breeds. We play dog bingo. He have a growing collection of fake plastic dogs. And life size stuffed animal dogs. And dogs are everywhere in our town, so we talk about the difference between dogs running loose or off leash, and dogs who are safe and contained on their leashes, with friendly tails wagging (Roman). Dogs are meaningful to Jasper.

We bring the book with us. It helps that we have read it many times, it is familiar.  The play is adapted from the book, so following along is mostly smooth, with a few frantic page turns. We whisper and talk about the familiar page from the book. It helps that there are only four main characters: blue dog, green dog, red dog, yellow dog – or “preferred color” dog. It helps that the set design is spare, with a plain background. It helps that the only colors onstage are blue, yellow and red. It helps that there is lighting. And it helps when we sit left of center, with the stage to Jasper’s right (visual field preference, Roman).

It helps that we have done all of this preteaching to give him visual access.

Afterward my son met the actors and each “dog” autographed his book. Jasper was beside himself with excitement, while this CVI mom blinked back tears of gratitude at seeing his joy.

It does not matter what CVI Phase a child is in, without visual access, the response is the same, He was not very interested. Looking at my son laughing and happy, visual access makes a world of difference.

“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.

As a Teacher of the Visually Impaired (TVI), it is my job to help educational teams find ways to make all activities accessible, as well as educate everyone about why it is SO critically important that children with CVI or other visual impairments, be fully included and have access to these very important, daily activities in the classroom.

“Fire is so loud”

When was the last time you read a story to a 4 year old child? If you imagine that scenario, it likely includes a picture book. Now imagine reading a book to a 4 year old and refusing to allow him or her to look at the pictures as you read. This would surely be a short-lived activity!

Why do young children need these illustrations to stay focused and interested in the story? Why is it that books for young children are so richly illustrated?

For young children, words are important, of course, but the real world (or a representation of it through pictures) is what they crave, because real world interaction is what they need to grow, learn and develop vocabularies rooted in meaning. Stripping away pictures from their books demonstrates very quickly how much young children need the pictures to anchor them to the words being read.

Children who have CVI or other visual impairments have a much greater chance of developing “empty language” than their sighted peers. That is, vocabularies that are not rooted in meaning. “Empty language refers to a situation of confusion where the blind or visually impaired child has words to talk about something, but incorrect or no ideas to attach to the words.”  (Anne McComiskey, Family Connect, American Foundation for the Blind). With less visual input, reduced shared visual attention, and fewer chances to interact with their environment, they may have poorer vocabularies and use “empty words.”

Consider this story to illustrate empty (or incorrect) language:

Carlos is a four year old, who has been blind from birth.  He attends a preschool program located within a public school building and fire drills are a common occurrence. The shrieking siren is extremely loud. Carlos’s team tells me he absolutely hates fire drills, covers his ears and cries throughout them. They have a hard time calming him down afterward.

One day, I was visiting him on a fire drill day. I tried to prepare Carlos in advance, by talking to him about it and warning him that one was coming soon. It did not help. He covered his ears, burst into tears and was inconsolable for some time after it was over.

When he calmed down a bit, and I could talk with him, I asked him about the fire drill, hoping to get him to express his thoughts and feelings. “I HATE fire!” he told me, through jagged breaths.

Then, it struck me. Empty language?

I asked him, “Carlos, what is fire?”

He put his hands to his ears and told me “Fire is so loud.”

Carlos had assumed that the siren sound itself was “fire.” Due to his vision loss, he had no direct experience with fire and had assumed (with good reason) that fire was the obnoxious sound. Think about it from his perspective: every time that horribly loud noise came blaring through the school speakers, the word he always heard associated with it was “fire.”

Sadly, I did not have any magic strategies to help him cope with the drills, but we could at least help him learn the difference between fire and the fire drill siren.

With empty language, children can frequently ‘talk a good game.’ Telling us that he hated fire sounded perfectly reasonable from a four year old perspective. But it was only though probing his thinking that we could discern his “empty” or incorrect language.

In children with CVI, empty language is also common. They may look at images or scenes but not be able to decipher or make sense of what they see. Meanwhile they hear language swirling around them. When the two don’t connect, the situation is ripe for the development of empty language.

Strategies: What can we do to prevent empty language?

Name the item that the child is looking at – keep it simple at first! “Cat, you see the kitty cat!”

Repetition is how all children learn language. Children with vision impairment including CVI need repetition as well, probably even more, due to processing delays and lack of experience. An adult may feel they repeat things millions of times, but it is not wasted effort.

Story time: Too often, children with CVI are plopped down to listen to stories in preschool programs, while their sighted peers have the benefit of seeing the pictures. We are doing a double disservice to these young children if we do not make the pictures accessible and available to them.

But how?

• Bring one or two of the central themes to the child. For example, for a book about a little girl and a pumpkin, bring a real pumpkin and a life like doll to the child. Support as they explore the objects with hands and eyes as the story is read.

• Use an iPad. For children who are able to understand and process pictures, take pictures of the book’s contents before the story is read. Show the child the pictures using back lighting, zoom in to reduce visual complexity, and expand function to their benefit.

• If the pictures from the book are too complex, showing these to a child who cannot process them is not helpful. If the story is about a cow, and the child has shown the ability to understand simple clear photographs, call up a simple picture of a cow and use that instead of the pictures from the book.

* Peggy Palmer, M.A. Peg is a Teacher of the Visually Impaired (TVI) working at Bureau of Education and Services for the Blind (BESB) in Connecticut for over 20 years, specializing in young children, ages birth to five. Peg is a Perkins-Roman CVI endorsee.

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”