Friday, April 30, 2010

Back 2 Blogging

I am ready to get back into blogging. But while taking my frequent and long breaks I've had time to think about what I want for my blog.

What is this blog really going to be about?
What is my blog: a family blog, a personal blog, and education blog?? what?
What voice is my blog going to take?

So while not writing on the blog I have come up with answers to these questions.
  • This blog is first and foremost our family blog. A blog where our family and friends can come to get updates on our comings and goings. Our family is large and spread out and this is the most efficient and economical way for us to keep ya'll posted.
  • It is a private blog, that way I can do things like post our phone numbers, and protect our privacy as we struggle through our life challenges.
  • It is a personal blog as it contains our personal opinions. But not personal in a way that warrants a preface or disclaimer to excuse myself. Although if there are any questions, or anything you would like to discuss with us, you are welcome to leave a comment or email us. And if you are a meanie, I do reserve the right to delete. [ I have not as yet used this right-but I have edited myself ]
  • This is an education blog, our little family has been through a whole *heck* of a lot. We've used our blog to share in the education we've received while dealing with Multiple Sclerosis, Multiple miscarriages, Infertility testing, Surgeries, Medications, Adoption and now Blindness. It will continue to be an educating blog as we learn and grow and discover things for ourselves, we are more than willing to share our knowledge and this is how.
  • About my voice. The voice of the blog changes constantly, as we are ever changing. I want to be a voice of hope, courage, determination, clarity and truth (and other things). But this blog is in the voice of a sister/ brother, friend, neice/ nephew, daughter/son, cousin or whatever we are to you.
So things will hopefully continue on normally.
We welcome, encourage and appreciate your thoughts,
if you don't want to comment publicly, email us!


Saturday, April 24, 2010

Courtesy for the Blind

Totally just FYI.
There are many different websites with Courtesy/Etiquette for the blind
and I liked this one the most...
And no worries if you mess up,
I (Shaylee) have,
there is a large learning curve for vision loss for all involved.

(I made a couple additions, they are in blue)
  1. I'm an ordinary person, just blind. You don't need to raise your voice or address me as if I were a child. Don't ask my spouse what I want—"Cream in the coffee?"—ask me.
  2. I may use a long white cane or a guide dog to walk independently; or I may ask to take your arm. Let me decide, and please don't grab my arm; let me take yours. I'll keep a half-step behind to anticipate curbs and steps. It is also okay to tell me of upcoming hazards that I may not be aware of.
  3. I want to know who's in the room with me. Speak when you enter. Introduce me to the others. Include children, and tell me if there's a cat or dog. And please let me know when you leave.
  4. The door to a room or cabinet or to a car left partially open is a hazard to me. As well as other things that I could trip on such as shoes, bags, clothes etc.
  5. At dinner I will not have trouble with ordinary table skills. But it is not impolite to make me aware of what utensils,condiments or food is in front of me.
  6. Don't avoid words like "see." I use them, too. I'm always glad to see you.
  7. I don't want pity. But don't talk about the "wonderful compensations" of blindness. My sense of smell, touch, or hearing did not improve when I became blind. I rely on them more and, therefore, may get more information through those senses than you do—that's all.
  8. If I'm your houseguest, show me the bathroom, closet, dresser, window—the light switch, too. I like to know whether the lights are on.
  9. I'll discuss blindness with you if you're curious, but it's an old story to me. I have as many other interests as you do.
  10. Don't think of me as just a blind person. I'm just a person who happens to be blind.

I have messed up. I left the room with out telling Joseph and he couldn't find me. I have also entered a room without announcing my presence and scared him. I forget, it takes time to learn. And we are learning more everyday.

His Eyes

The question we get most often... so what can Joseph see?

It's hard to believe that there these beautiful baby blues

Don't see much.

These are part of his field of vision test:

(Left and Right Respectively)

The black parts are where he cannot see, it's not black or white,
he says it's just blurred beyond comprehension.

Besides the blurred spots, his eyes are constantly shaking.
This is called Nystagmus (click for more info)

Definition of Blindness from the National Federation for the Blind (NFB)

The federal statute defines blindness as follows:

[T]he term "blindness" means central visual acuity of 20/200 or less in the better eye with the use of a correcting lens. An eye which is accompanied by a limitation in the fields of vision such that the widest diameter of the visual field subtends an angle no greater than 20 degrees shall be considered for purposes in this paragraph as having a central visual acuity of 20/200 or less.

In a letter from his Ophthalmologist Dr Deitz :
"[Joseph] has bilateral optic atrophy,
resulting in the best corrected vision of 20/400 in either eye."

Most of the time when asked, I say he is blind,
only when pressed further I will elaborate
on what he can and cannot see.

I hope this answers the question.