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Monthly Archives: March 2009 - 2. page

Growing Concerns

I took Eric to pick up his new braces yesterday, new AFO’s (ankle-foot orthotics or in layman’s terms, leg braces) and a new body jacket (a brace to help in sit up straight). Unfortunately, his AFO’s have to be redone, because they were not made correctly. It’s a silly system really. If you need an orthopedic device, first you need an order from the doctor, then you take the order to an Orthotist who measures and sometimes – as in the case of AFOs – casts the feet. Then the casts or a scan of the cast is sent off to a company where the braces are made. Then they send them back to the Orthotist, who can then make minor adjustments. Years ago, the braces were made right there in the Orthotist’s office, so he/she had much more control over customizations. But now, with the current system, if there is a mistake, the braces have to be re-done. Seems wasteful and time consuming, not to mention getting all of this approved by insurance. Nothing is every easy with Eric…Will have to wait a bit longer for the AFOs.

We did get his new body jacket. It will take some time for Eric to get used to the new jacket. There is a break in period were we have to watch him closely for redness and/or irritated skin. Eric has kyphosis; his upper spine is bent forward from poor posture. Because of his cerebral palsy, he doesn’t have the strenght to sit up straight in his wheel chair, so he wears the body jacket to help support his torso, along with straps on his chair.

I was surprised to see how much Eric has grown in a relatively short time. I think he has had his old body jacket for about 18 months and just look at the difference in size! No wonder I’m having trouble lifting him! (old brace on the left, new on the right – well, obviously;-)

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Eric’s EEG Results

It was not a totally ideal study, because Eric didn’t fall asleep and because he was moving a lot. Nonetheless, there were no abnormalities that looked like they might have caused his seizure. So we will just wait and see if he has another. If he has another seizure he will see a neurologist.

As the doctor told us, everyone is allowed one seizure before starting medications. Could have been a fluke, although unlikely for Eric because of his cerebral palsy. Still we are hoping this was a one-time episode.

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Obama’s Special Olympics Gaffe

Ouch!

So, the news and blogesphere is buzzing about Obama’s bad joke on the Tonight Show.  First, I do think the issue is getting blown way out of proportion.   Part of the reason might be because this is the first stupid thing I’ve heard Obama say since his presidential campaign kicked off.   But, did it have to hit so close to home?  I would think a member of a minority would be extra sensitive to the issues of other minorities.  I would also think that just the words “Special Olympics” would be used with caution by a politician.

Being a disability advocate for my children, I feel I should post something about this comment by the President.  It was obvious that the President was poking fun at himself, but unfortunately by comparing himself to the Special Olympics, he unintentionally made fun of the special olympiads as well.  A very unfortunate blunder, but hopefully this can be a learning experience for Obama as well as the general public.

When I first saw the above clip, I posted a tweet, which went to my facebook wall (below is the message).  This tweet easily broke my comment record and still counting.

“Cynthia Bissell is wondering what the disability community thinks of Obama’s Special Olympics comment. I’m thinking, Oh well, he’s not perfect after all…”

Here are some of the comments from FaceBook Friends:

“I think it’s pretty shitty. Not cool.”

“I’m sure it wasn’t mean spirited, just ignorant. Growing up I used to use the term “retarded” all the time, never really thinking about it until I realized what a lot of people with children with special needs felt. I was being very poopy and it never occurred to me. :(“

“He’s going to have to do something REAL special for them now that’s for sure!!”

“I agree. He’s not perfect. He was making a joke about himself. He did not intend to hurt anyone. I think the media tends to blow things out of proportion too often.”

“I understand he called the head of the special olympics immediately after the show- it was a stupid remark by a man we think is perfect, who is human after all! The difference for me is he takes responsability and puts himself in real situations where real people can see the best and the ongoing struggle to be the best.”

“We all say things sometimes without having enough time to think. That only makes human.”

“that’s too bad he used that analogy … highly inaccurate assumption about special olympians and bowling! there are MUCH larger fish to fry tho so I guess we’ll forgive him.

“I was pretty upset to see 1) Obama say that and 2) Jay Leno laugh and 3) the audience laugh. It’s really a good glimpse at how far we have to go. What was so funny? I’ve seen and been involved with SO and the athletes are NOT funny and NOT bad bowlers either. I hope something good comes of this, I was really surprised to see Obama do that, really disappointed.”

“I also hope that some good comes out of it. It was shocking to me, I know it may not seem like a big deal to some but all I can say is WHAT WAS HE THINKING?????? Jeez. And I like Obama!”

“My thoughts are, maybe this will help shed some much needed media light on Special Olympics, and really, economy is going to hell in a hand basket (not sure who’s) so media should move on!!”

“…you know my involvement with Special Olympics … I’m VERY sensitive to that kinda of language misuse when it comes to special needs. One can only hope that some good will come out of this.”

Addendum 3/21/09, best reply yet from Michelle:

“Obama’s comment just underscores how pervasive discrimination against mentally disabled people is in our society; most people will still consider the “r word” socially acceptable when it’s really just as bad as the “n word”. But inviting Special Olympians to the White House for a bowling lesson, while it may be good PR, won’t do a thing to fix the problem. I’d like to see them hire a mentally disabled person to work in the White House. Not only would Obama be setting a good example for businesses, he’d make a real, concrete change in someone’s life.”

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Breathing Room

I moved all of my photo files to the external drive that Jon gave me.  Now my files have room to breathe.  Below are a couple of screen shots, my internal drive with the photos and without the photos.  Yes, I’ve got 175GB of just photos!  They are also backed up on a home server.  I’ve always love to take pictures, but I’ve gotten totally out of hand since I went digital in 2000.  I’ve got about 20GB of high resolution scans of old photos dating back to some of my grandparents’ photos from the 1920’s, then my parents’ photos and my photos up until 2000.  So, 20GB from 1920-2000 and 155GB from 2000 to 2009.

People sure do take a lot more photos now than they did before digital.  Hopefully they are protecting them via prints and backups.  I know I’m very careful about backing up my files, but I really should take some time to have some of my favorite photos printed.  Who knows what format will be readable 100 years from now, but we know from history that hard copy photos can last 100 years if they are printed with quality inks and paper and then stored properly.

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Witch Hunt in Gambia

Gambian President Yahya Jammeh, pictured in 2006, invited witch doctors to the West African nation.
Gambian President Yahya Jammeh, pictured in 2006, invited "witch doctors" to the West African nation.

(CNN) — Around 1,000 people accused of being witches in Gambia have been locked up in secret detention centers and forced to drink a dangerous hallucinogenic potion, according to human rights organization Amnesty International.

A bit of a time warp to the Salem witch trials of 1692.  Crazy stuff in 2009.  But I suppose it is not much of a stretch for people who can believe in gods, devils, angels, spirits and/or miracles.  Why not witches, spells and curses?  People can be so delusional, it’s scary.

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