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.

Monday, March 22, 2010

B-u-s-y

On March 16th
We went to Spokane.
Appointments (P.T. and Neurology) went well,
Joe is doing well.
Lost a little muscle tone- understandably so, he's not working.
But small improvements overall.
He does NOT need a support cane or stick,
using the white cane should be enough,
but he may need to learn to use it completely without sight.

Saw Sharon - Technology Counselor (DSB)
She's awesome. She's hilarious.
We learned a lot about how to make the computer accessible for Joseph again.
and programs and electronics that can be purchased for him.

He now has a talking watch, large number alarm clock,
talking calculator, and a digital voice recorder.

We will be starting Braille this week.

Another post coming soon.

*s

Sunday, March 21, 2010

Prayers needed.

A dear friend just found out that their 2 1/2 yr old daughter has leukemia. Please send prayers their way. Briana, Eric, Elena, and Lily we are fasting for you today.

Love the Mechams

Friday, March 19, 2010

Giveaway

I would like to win just 1 giveaway, once. This is the latest giveaway I've entered!

-S

Saturday, March 13, 2010

White Canes (clarification)


This is a "white cane", Joseph's is a little different though. I realized the term white cane can be confusing, so I will clarify. It is all white or white and red. Joseph has a white and red cane, it's called a cane but it more of a long stick, with a roller on the end, so it can be swung back and forth in front of the person using it. There are also support canes made all to look like white canes too. So when you see someone walking with a white or white & red cane (or stick if you will), it means they are legally blind- to fully blind. The cane swings out in front of them just a couple inches wider than shoulder width, so far people have understood when they've seen us around and moved out of the way when Joseph is out and about, using his white cane, which I appreciate.

** News flash** Joseph went walking today without Albert (trek pole) and just the white cane and he walked great!! Good balance, and walked really straight!! We will keep practicing.

Friday, March 12, 2010

Yet another update on Joseph

Sorry for the month-long absence, we've had a lot going on and very little time to write about it. In fact this should be the 1st of many updates.

Doctor
Joseph will see his neurologist on Tues (the 16th). He will have a physical therapy session first. During which they'll determine what kind of stick or cane will work well for him and get him started using a white cane. (and the normal physical therapy stuff).

White Cane
Why is Joseph goin to use a white cane? A white cane identifies his as legally blind, so it will or should make others aware that he can't see them. The cane will also help him find bumps, steps curbs etc, that he can't see, before he gets to them. He will learn his white cane skills without vision (using sleep shades and resisting the urge to look down) When he is good with a white cane he will be eligible for a guide dog.

OTC
The Department of Service for the Blind (DSB) has an Orientation Training Center (OTC) for those with vision loss ranging from visually impaired to totally blind. The OTC is in Seattle, we went there on Tues the 2nd. We had a guided tour of the facility and the apartments. We had a packet of info about the OTC before we came for the tour, but we had yet to make a decision about Joseph attending there. They have terms that are 5 weeks long with 1 to 2 week breaks, he would have to live in Seattle during term.

The OTC offers many classes: home EC, shop, computers, keyboarding, zoom text, jaws, orientation & mobility. braille etc, we saw all of the classrooms and met most of the teachers, who talked to us about their particular subject. It was a great facility and the tour was awesome. I was a silent follower for most part, and I left the decision about attending up to Joseph. He said that his mind says its wonderful, but it doesn't feel right. So he won't be attending there. He has opted to do the training at home.

** update (since I originally wrote this)**
Joseph's mobility counselor came over yesterday and he now has a white cane and has started training with it. We should be receiving our braille books here soon and possibly participating in a class via telephone through the OTC. And that is an exciting/scary thing because braille is supposed to be pretty darn hard to learn. - side note Steffi, (mobility counselor) has said that she was very impressed with Joe's ability to learn A,B &C in braille one day when he was introduced to it. She was equally impressed with his rhythm with a white cane, he won't struggle as much as some she has worked with... I may be an entirely different case!

P.S. His white cane is named Ernie, rightly so since his trekking pole is Albert...

Monday, February 8, 2010

Keeping up Hope

Lately we've heard the comment that people are impressed with how positive Joseph and I have been through all our trials. The first thing I'd have to say regarding our positivity, is that our attitude is our choice. And every single day, we have to make that decision over again. The choice between letting our circumstances rule us, or to take charge and have faith, courage, and hope to make the best out of it.

The second thing I'd say is that we're not so positive everyday, or even all day long. Sometimes its all just too much. The day the doctor gave the diagnosis: legally blind, optic nerve damage. That was WAY too much. We had so much hope going into the appointment, and left with our lives changed- much like another appointment I've blogged about. We had been coping with the vision loss as temporary but the day we found out it's permanence, the coping strategy changed. Before calling our parents, or even going home, as both were unfathomable .The news weighed heavily upon us, so we instead went down to the river and sat on the docks. The days following the appointment, we were zombies- so much so that we didn't remember to eat. Things are much better than that week, but it is still hard.

We feel the pains of our struggle with infertility again somedays, sometimes more that others. Lately it's been hard because we know so many people who are expecting. At least on in every group of friends we belong to, literally, no exaggeration. We just want to be a family. On bad days I think to myself that they'll all getting fat and I'm losing weight. No offense, but it makes me laugh and feel better.

And we have found a new love together, that we enjoy, especially when stress runs high... Dr. Seuss. I don't know what Joseph likes more, Dr Seuss' literary style or my struggling to read it out loud correctly. I'll share some wisdom from our little Seuss library. (edited because it's long)

Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you chose
you're on you're own. And you know what you know
and YOU are the guy who'll decide where to go.
(...)
out there things can happen
and frequently do
to people as brainy
as footsy as you.
And when things start to happen,
don't worry, don't stew.
Just go right along
You'll start happening too.
OH, THE PLACES YOU'LL GO!!
(...)
Except when you don't
Because sometimes you won't
I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
can happen to you.
You can get all hung up
in a prickley perch
and your gang will fly on.
(...)
You'll be left in a lurch
You'll come down from the lurch.
With an unpleasant bump.
And chances are, then,
that you'll be in a slump.
And when you're in a slump
you're not in for much fun,
un-slumping yourself
is not easily done.

Oh the places you'll go! There's fun to be done!
There are points to be scored. There are games to be won!
*and make you the winning-est winner of all.
Except sometimes when they don't
Because, sometimes they won't
(...)

Whether you like it or not,
alone will be something
you'll be quite a lot.

And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants
There are some, down the road between hither and yon.
that can scare you so much you won't want to go on.

But on you will go.
though weather be fowl.
(...) on you will go though your enemies prowl
onward up many
a frightening creek
though your arms may get sore
and your sneakers may leak.
On and on you will hike
And I know you'll hike far
and face up to your problems
whatever they are.
so be sure when you step
stop with great care and great tact
and remember that life's
a great Balancing act
... And will you succeed?
Yes! you will, indeed!
(98 and 3/4 percent guaranteed)

On bad days I'll read this and other ones too. And we've gotten a kick out of changing the colors of the illustrations on Joseph's enlarger. But there are days when we're grumpy. Days when we want to bury our heads in the sand. Days when we want to give up. Day we want to scream. Day when people's comments don't bounce off us like they should. Day when we want to curl up under the covers and hide. But there are also good days. Days when we laugh and giggle 'til we cry, or have to pee. Those are good days.

When you think things are bad,
when you feel sour and blue,
when you start to get mad...
you should do what I do!

Just tell yourself, Duckie,
you're really quite lucky!
Some people are much more...
oh, ever so much more...
oh, muchly much-much more
unlucky than you!

It's a troublesome world. All the people who are in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you're lucky you're not!

Thank goodness for all of the things you are not!
Thank goodness you're not something someone forgot,
and left all alone in some punkerish place
like a rusty tin coat hanger hanging in space.

That why I say, "Duckie!
Don't grumble! Don't Stew!
Some critters are much-much,
Oh, ever so much-much,
so muchly much-much more unlucky than you!"

*s*

Thanks Dr Seuss for the quotes!! Oh, the places you'll go! and Did I ever tell you how lucky you are?

Friday, February 5, 2010

nag nag nag...

You know when there is something that you just can't get off your mind,
and it nags,
and nags,
and nags until you do something??
Well I have some of those..
there are a lot of things I worry that Joseph is left out of
reading definitely (but he's never been much of a reader)
the biggest one lately is that he can't read his scriptures.
We listen to them on CD (thanks so much Joy)
but he has no real portable way to carry them,
or listen without help.
Until now...
that nagging in my head has (almost) gone away.
Joseph has an ipod.
a big one,
I am downloading all the scriptures in English from lds.org
and the Book of Mormon in Portuguese.
And the last general conference (or two or three.. whatever he wants)
and church magazines
and Jesus the Christ
all audio, mp3 files!!
We can add John Bytheway talks,
and other books we've acquired
and talks my mom downloaded for him a while ago.
And oh the music!!
(he has requested his brasilian pop for sure)
eek!

Now I can sleep!

*s*


Wednesday, February 3, 2010

Modifications

had to be made to our daily life and routines. Joseph's eyesight (or lack of) is permanent we are learning ways to make life easier and more normal for him.
These are some of the modifications we've had to make...
(lots of pics, it would be hard to explain without them)

Meet Albert, Joseph's walking companion.
He is a trek pole,
our favorite REI guy hooked us up at the REI bi-annual garage sale. He knew we were coming and what we were after he held onto these (I say these because it was a set of 2, 1 broken, 1 good) and brought them to us while we were in line with our other finds.


Albert has a great handle with an adjustable strap.


We modified the tip by adding a rubber cap.
In Home modifications:
This is the dryer, we used craft foam with a sticky back used a hole punch to make the lovely dots. The dots are color coded and tactile. Joseph just has to line up the dots (using sight and or touch).
This is the washer, he has to line up the dots to turn the washer on the normal cycle.
Steffi (Mobility Counselor) made a house call and she checked this out, I got a high 5!

Joseph's Enlarger (or CCT TV whatever that means)
It has a camera under the TV part and you can make adjustments, like zoom, focus, invert color, color changes, reading lines or blocks.


This is normal color

Inverted

And color change, there are many colors, some easier on the eyes than others!

So, that is your little peak.

*js*