Special Exposure Wednesday

I discovered this antique wheelchair in our local "Restore" which is run by Habitat for Humanity. It seems so beautiful and fashionable, almost as if the owner was celebrating its use...

From One Second to the Next

"From One Second to the Next," the film below, came together when AT&T approached the legendary German filmmaker Werner Herzog and asked if he would direct a series of short films warning people about the dangers of texting while driving.

"What AT&T proposed immediately clicked and connected inside of me," Herzog told the AP. "There's a completely new culture out there. I'm not a participant of texting and driving—or texting at all—but I see there's something going on in civilization which is coming with great vehemence at us."

The result is haunting. It focuses on four accidents, some of them fatal, and Herzog aims his camera squarely at the faces of both victims and perpetrators, asking them to describe in detail what happened and the aftermath. Herzog emphasizes the change in civilization he perceives in part by examining an accident in which an Amish family was killed and another in which a horse-shoer's truck was involved.

It's long, about 35 minutes, but I believe well worth your time.

Goodbye ESY

Summer school/ESY services came to an end this past Friday, and I must admit that I am very glad.

For the past 5 or so years, ESY for Ashley has meant going to a central school location with a lot of other students with a myriad of disabilities.  From the beginning, I questioned just how much of the "I" in "IEP" was addressed during the summer, but since Ashley seemed to be having a good time - at least the first year or so - I went along with it.  But the past couple of years have not gone well.

I never know who her teacher is, who her aide is, who her interpreter is.  I have no idea if any of those people have any working knowledge of deafblindness.  The only status reports I receive say "Ashley had a good day."  Twice she brought home a cupcake from school - homemade, and I won't even go into the reasons why I threw those away rather than letting her eat them.  Apparently the class took a couple of trips into the community because I was asked twice to send money for a 'shopping trip."

But the biggest reason I am done with centralized ESY/Summer School services is that Ashley gets hurt- a lot - and no one can explain how it happens.  Last year, it was a serious abrasion and many bruises.  This year, she has come home almost every day with a new bruise.  When I asked the teacher (via note because I didn't have any other way to contact him/her), I was told they had no idea, that Ashley had two people with her at all times (aide and interpreter) and neither had seen anything.

So, in support of Ashley's health and safety, she will no longer be participating in this particular model of ESY services.  I strongly believe that she needs ESY services.  Heck, I went to due process and won over ESY services.  But the way it is currently structured just isn't working.

I'm not going to worry about it right now since it's over for this year, but next year, the IEP team will need to engage in some serious discussions on the subject.

If A Tree Falls....

I'm not one to dwell on the things that my children with disabilities can't do. Rather, I focus on and share constantly with others all the things they can do. But every so often, I go to that place that makes me wonder - do my children themselves see their disabilities as a negative force in their lives? The subject I visited last night as I drifted off to sleep was the land of sounds.

My two Deaf children will never hear the sounds that evoke such strong feelings and memories in my life - a train whistle, waves crashing on the beach, wind blowing in the trees just before a summer storm, a tea kettle whistling, a bird's song, or the sound of cicadas calling for their mates, for example. It seems so much of my past life and memories are wrapped around sound as well as all my other senses. Ronnie can't include sounds in his memories, and Ashley is unable to include sounds or sights in hers. Do they feel they are missing something? Does it make them sad? Or, are their memories molded by other things, things that are equally as strong as mine which do include sight and sound?

There are some wonderful and necessary accommodations that can be made for the Deaf and Blind - doorbells that flash lights, alarm clocks that shake beds, bumps on paper to make words. But how does one accommodate for the sound of a waterfall or the vision of a V-shaped flock of geese in the sky? There is, of course, sign language to explain sounds - a barking dog or a police siren, for example. But what to these signs mean to a Deaf person? If I sign 'dog bark loud', does Ashley understand what loud is?

The questions in this post are mostly rhetorical, and just musings of my sleepy mind. But I wonder, do my children feel they are missing something in their lives because they can't see or hear, or are their lives equally rich and built upon their own realities of ability....????

Special Exposure Wednesday

My old house got a little bit of an upgrade yesterday.  When houses were built 55 years ago, most of the electrical outlets were installed as non-grounded, two pronged outlets.  I don't quite understand why since in most of my two prong outlets there was a ground wire already present.  A lot of my outlets had stopped working, and worry about fire was always on my mind.

So yesterday, I had all the outlets switched to grounded three prong outlets.  And since the electrician was already at the house, I had him fix a few other things - an outdoor light that had stopped working, and some fluorescent lights in my family room.  Things got so much brighter!  Ashley loved it and couldn't stop signing "light", but all I could think of was how I was going to have to clean a little better.  The dust became much more visible with the new lighting!

August Has Got To Be Better

I'm glad that I had a wonderful week-long vacation at the end of June this summer because July was possbily my worst on record.

First, just as my vacation was ending, shingles was taking hold of my left side, from my spine and wrapping around my side to the front. First came the numbness, then pain, then blisters, then more incredible pain, and there was a little flu-like illness thrown in for good measure. My doctor prescribed an anti-viral medication that was supposed to make the symptoms not be quite as bad, and some prednisone for the pain. If what I got was not as bad, I would have hated to see what things would have been like without those two medications. It's now been a little over 5 weeks and the blisters are gone but the numbness remains and the pain rears it head just every so often. All in all, things with it are not too bad today.

But, let's step back two weeks. So halfway through July, I eat some tainted food and end up with shigellosis. That's a disease that is food-borne and wreaks havoc on your digestive system. It's been two weeks now, and still in the morning I have to take an anti-nausea pill. I've lost 8 pounds, and I still have difficulty watching food commercials on TV. But....I think the shigellosis is also on its way out. I am at work today after 9 days out, the last 9 days of my sick leave for this year.

So, here's hoping August is better! I don't wish on my worst enemies either of the two illnesses I experienced.

Jenny GOT Justice!

This picture says it all!

Check out this video link where Jenny's incredible attorney speaks and Jenny expresses her absolute gratitude and excitement!  And then this statement from the ACLU on Jenny's win.

This win is about a person, every person, being able to have choices in their life - a win which reaffirms the right of every person, regardless of their level of ability, to live a full and rich life.  This win makes a difference for Jenny as well as all the Jennys who come after her.  This win makes a difference for my children and yours!

Congratulations to Jenny, her new guardians, and to her incredible, special attorney, Jonathan Martinis of Quality Trust for Individuals with Disabilities.