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The Checkered Eye Project

People wearing this symbol have partial blindness aka low vision.

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Just Newsy

I had another post almost ready for this month's entry but some really cool stuff happened just recently that I think will upstage that...

On Facebook I discovered a group about awareness for Stargardt's Disease (S.D.).  This is the condition that caused my visual deficit.  Cool.  I thought I'd join up and see what folks were talking about.

One of the posts was a list of bloggers who have S.D.  This caught my interest so I opened up one of them.  I started reading the blog and comments and was quite moved by reading a dialogue between the blogger and a lady in her 30s who'd been recently diagnosed with S.D., and was sounding quite upset.  The blogger gave her some reassuring information with a personal touch and the whole thing reminded me how wonderful peer support can be.  I've been living with this condition since I was a kid and can likely ease the worries of some people who are fretting about what's to come.  It will be great for me also to have people to chat with who can relate directly to some of my experiences and offer their perspectives.  I've got to work on my technical skills though because I wasn't able to figure out how to post the comment I composed! 

Another recent discovery was the movie "Going Blind".  It's a documentary about a man's experience of losing his sight and learning about what help is available for people like himself. I haven't seen the documentary but my impression is that it outlines some services, products and strategies people use to manage with visual impairment and the fact that hardly anyone is aware of many of them.  Of course I thought immediately about the checkered eye and how it would have been perfect to have some info about it included in this movie.  Well that ship has sailed, but I've had some contact with the people responsible for the movie, and I'm optimistic about doing some sort of cooperative thing.  They also have a Facebook page and the host posted a link to the checkered eye website.  It got 23 "shares"!  As a result, I've been getting some really widespread queries and orders.

And of course my own personal recent goings on: I got officially approved as a candidate for research into treatments for S.D.  All I had to do was give a blood sample which was then tested to determine if I have the genetic mutation associated with S.D., then wait a year and a half for an appointment with a doctor who could verify by examining me, that I in fact have S.D.  The final step felt a bit like an awful fuss to gather the same information we've had for many years, but now they have current photos of my retinas and I got to take a wee trip to Toronto with my hubby.

So on my trip I was delighted with accessible literature in a couple instances.  First, at the Delta Chelsea Hotel, where I requested accessible literature when I made my reservation, I was very happy to find a large print version of their room service menu and emergency procedures, and a phone with an oversized keypad.  I've been asking for these accommodations for years and this is the second time they've ever been succesfully provided.

Naturally when my hubby and I went for a bite and a beer at Jack Astor's, I asked if they have a large print version of their menu.  Expecting the usual response, I was surprised, as was our waitress, to learn that they did in fact have an accessible version which had both large print and Braille.  Super! 

My reading software must be from the US because when I was using the initials as an abbreviation for Stargardt's Disease without periods,  it was saying "South Dakota"!  I figured I should add the periods for any readers who use screen reading software. 

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A post by Sam Thaw

 The above photo depicts 18 yesar old Sam Thaw helping his mother Libby by reading receipts while she completes documnents for the Checkered Eye Project tax return.  This blog post was written by Sam.

 To have a parent with low vision comes with advantages and disadvantages. The latter consist of things that could be looked upon as chores, but, have made me sensitive to and aware of other people’s needs, whether they are mental or physical. Advantages include being able to sneak a little "something something" by her in the night or free 411 for our family. The so called chores consist of helping my ma cross the road or walking with her somewhere, reading articles or labels to her.

Being able to sneak something by her use to come in handy when I was younger, trying to get three cookies instead of two and sneaking paraphernalia past her. But as I grew older I realized that I felt guilty using her visual acuity to my mischievous gain. That realization was a good lesson for me. It taught me that just because you can cheat, and not get caught, doesn’t mean you should. I took that lesson and transferred it to cards, video games, and day to day life.

The chores I do to help my mother are quite easy, though as a selfish youth I sometimes secretly loathed the moment my mother wanted me to walk or read with and for her. As I grew older, I became aware that this was something I could do to make my mother’s life easier and more comfortable. I’m now happy to help her out doing whatever she needs. These chores have also made me more aware of what other people need. For example help an elderly person by grabbing something heavy or out of their reach for them.  All in all I feel like having a parent with low vision is a good experience, thanks for everything ma.

 

 

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Parenting/Celebs

When I talk about raising kids as a person with low vision and what concerns or strategies I had, there are a few things that jump to mind.  One was the importance of reading and that I wouldn't be able to model that.  I'm so relieved that my kids turned out to be readers.  I was not a good example of someone who enjoyed reading or who sought information in books so I worried that they wouldn't pick it up. Fortunately Ray is an avid reader and he read bedtime stories to them.  He also read them some novels as they got older. I think my part in encouraging reading was that, as soon as they could, I would have the kids read things for me.  I imagine that could have also been a bit of a confidence booster for them. Being a "helper" for an adult can be an ego boost for little ones.

We live in a beach town so a strategy I used when going to the beach was to have them wear large brightly colored hats.  I was doing a bit of sewing at the time so I made them myself.  It was a good thing I could do that because I wanted them really big!  They were too young to be self-conscious about them, but eventually the spectacular hats had to go.  After that, if we were on the beach, I just went everywhere with them.  If I didn't feel like swimming, it was sand sculpture and water erosion experiments till I got my energy back!  

Another practice we had was that if we were in a park and they wanted to play a distance from me they had to sing, and loud!  The alphabet was the usual song of choice and again, they only did it until they were old enough to feel it was just too uncool!  We had to develop some trust so that they could play further than arm's length from me. 

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Last month I was delighted to receive a brief video greeting from Rick Mercer.  It was a 24 second spot in which the comedian gave the basic information the CEP is trying to pass along and encouraged visiting the website for more information.  It had taken a bit of begging and pleading so as soon as I got a yes from them I was over the moon. 

I immediately put it up on Youtube and shared it on my Facebook page.  Ray posted it on the Champions for the Checkered Eye Facebook page, because I couldn't figure out how to do that! 

Well, Rick Mercer got "shared" a lot more than any other checkered eye video's I post.  I suspect this is because he is a famous person, someone people recognize.  Familiarity seems to catch people's attention, so I'm now making more efforts to see if I can engage any "famous people" to help tell the whole wide world what the checkered eye means. 

If you know anyone famous, can you send them my way?!?

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