Recently, I talked about the importance of access to good literature in multiple formats for the visually impaired and explained that I'm invested in this issue because of the J-Rex. As a way of facing some issues I loathe to face, I want to talk a little bit more about her condition and where we are at in terms of her learning and the physical difficulties she is beginning to face.
First of all, it is important to understand that the term "visually impaired" covers a huge variety of eye conditions, with each individual lying along a spectrum of visual acuity, from low-vision to legally blind to complete blindness. The J-Rex has a genetic condition, albinism, which results in her eyes having no pigment to protect them from UV light, no fovea, a shortened optic nerve, nystagmus (when the eyes move rapidly from side-to-side, or "shake"), low vision, and several other related eye conditions. Practically speaking, this means she is photophobic, has no focal point and minimal depth perception, has difficulty seeing through visual clutter, only sees detail if it is six inches away at max, and suffers from eye strain frequently. In addition, she has an enhanced aural sense and tends to be very easily distracted or disturbed by loud noises or environments with an echo.
When she was first diagnosed, we got a lot of help through early intervention programs and did a lot of research on our own to better understand her vision and the hurdles she might face in life. Still, it was hard to know what she might need in terms of adaptations and therapies as she developed. When we entered the school system, we began receiving mixed messages, with some vision instructors insisting that the J-Rex could wait until middle school to begin considering Braille instruction and had no need for Orientation and Mobility Instruction (O&M) or the Expanded Core Curriculum for Blind and Visually-Impaired Youth (ECC) while others told us about her sun-blindness affecting her on the playground, suggesting she learn to use a white cane on sunny days and that she have a full spectrum of therapies and the ECC in her schooling plan. Wanting the J-Rex to be treated as much like her sighted peers as possible, we were fairly convinced by those providing the first message: that she would need little to no adaptation until much later in her schooling career.
Our first hint that the above advice may not have been right was the difficulty the J-Rex had when she was mainstreamed for Kindergarten. Our difficulties with the schools (the sole reason we started homeschooling) is another story for another day, but suffice it to say that the J-Rex did not handle the mainstream, non-adapted classroom setting well at all. Since we were not able to observe her in this setting, we could only know something was wrong, but we had no idea which adaptations she was missing and which she could live without...
As we started our homeschool journey last year, the J-Rex's first grade year, I made sure her materials were enlarged to her minimum font size, provided her with blue bold-line pens (and white-out!) for writing, kept the lighting levels as ideal as possible, let her use her slant-board (the sole adaptation she had been provided with in public school), provided several magnifiers of different types to use as needed, and started making observations. A couple of things were immediately apparent: The moment she switched from pencil to bold-line pen, her handwriting immediately began becoming legible (it's still incredibly messy, but at least strangers can read it now). As it turns out, she hadn't been able to see what she was writing! Also, her ability to read began improving dramatically as soon as all of her materials were enlarged and the lighting was improved (either one of these two things being "off" inhibits her reading speed and increases her distractability when reading).
As the year went on, I began to learn more about some of her areas of difficulty: First, the J-Rex's lack of a fovea makes copywork torture for her. Second, I began to see that the act of writing and the difficulty that activity poses for her distracts the J-Rex from learning content in a significant way (i.e. she will be able to spell a word perfectly and without hesitation orally but if she is asked to write that word during a spelling test, she might skip letters not because she doesn't know how to spell the word but because she's so distracted by the simple act of forming her letters on paper). Third, the J-Rex is unable to make the same kind of scientific observations that the fully sighted can make - for instance, when we were learning about the water cycle and doing a common elementary-school experiment on the respiration of plants, she was completely unable to see the water condensation that was key to understanding the topic.
During that first year, the J-Rex never advocated for herself. She would be grateful, happier, more focused, and more productive when I would turn on an extra light or magnify something small we were looking at...but she wasn't asking for these things herself. She never used any of her magnifying implements (though we did find out this year that some of that may have been that what we had at the time were such low magnifications that they were basically useless to her - she now has a dome magnifier that she uses occasionally and mostly independently) unless I suggested them first. She would never ask for descriptions, even when I knew she couldn't see necessary detail, and she wouldn't tell me when a task was difficult for her - an issue that led to many a conflict as I was forced to play a guessing game as to the reason she wouldn't be doing her work.
Despite all this, by the end of first grade, the J-Rex was progressing far more rapidly than I had expected...and this led to a whole new set of concerns, far sooner than we were anticipating...
(To be continued in Vision and the Education of a J-Rex, Part 2)
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