RE: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

Ov coors.

 

As I recall, the old Gen2 would shut down at 204 F., but anything above 150 is something to watch. There’s a phenomenon called “molecular migration” where even molecular impurities in today’s microscopic circuits will shift around over time, causing circuit failure. Naturally, any excess heat facilitates the process. Modern chips come with a certain number of backup circuits to battle the problem.

 

Then again, heat in any computer is lost energy.

 

From: Lourez Bullock [mailto:lourez_bullock@sbcglobal.net]
Sent: Wednesday, April 02, 2008 3:43 PM
To: ‘Scott Royall’
Subject: RE: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

 

I don’t care….as long as the last para. Is deleted. 

 

It’ll be interesting to see what your Dell contact turns up on the heating issue.  At what temps is damage a concern?

 

 


From: Scott Royall [mailto:royall@conchbbs.com]
Sent: Wednesday, April 02, 2008 2:51 PM
To: ‘Lourez Bullock’
Cc: ‘Paul Rice’
Subject: RE: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

 

May I blog this, minus the last paragraph, of course?

 

Jemma is going to have to assert enough control to run that keyboard by herself before any AAC will do her much good. Otherwise, there will always be an air of suspicion no matter how scrupulous the help is. Also, my experience with reporters has been that their jobs require most to be superficial generalists. Likely the most Allan could tell us is how to reach the mom.

 

As for Invacare, you’re just now learning a sad reality I’ve known for at least a decade. Their practices are designed solely to maximize profit and minimize any possible risk. The saddest part of the story is that Invacare is still the best domestic chair company, and they occasionally manage to come up with decent stuff. That is why I’m so reluctant to part with my ’97 Arrow HD. Apparently, that was the last time a reasonable design slipped by Invacare lawyers. (Nope, no smiley face.) Of course, that points to a much broader issue; liability laws in this country are insane. Sure, a company should hurt when it truly gets stupid, but so should customers! I remember a 20/20 segment years ago where a power chair user sued the manufacturer because his chair supposedly went crazy near a cell tower. The story was that he went over a cliff, but it really appeared that he had ample time to slap the power switch. Contrary to what Stephen King would like us to believe, even demented machines need power to move. No, I can’t see rocketing medical costs stopping as long as lawyers and insurance companies are involved.

 

 

From: Lourez Bullock [mailto:lourez_bullock@sbcglobal.net]
Sent: Tuesday, April 01, 2008 11:17 PM
To: ‘Scott Royall’
Subject: RE: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

 

I had clipped the article to bring to you tomorrow or Thursday before we go out of town for the weekend.  My first thought on reading the article was the same as yours, Scott.  My suspicion of Mom helping Jemma is very strong.  The child’s vocabulary, apparent intellect, writing skills are all extraordinary – if true.  My second thought was, perhaps contacting the reporter to explore whether Jemma is a candidate for XpressIt…….so that SHE could actually express HER thoughts aloud.  Of course, Mom would still be wielding the stick………

 

So far I’m not having any luck locating rebuilt motors, as you thought.  Reading comments by Invacare  customers about the woeful inadequacies of certain models of power chairs is disheartening and sidetracked me for a while.  Wasn’t the firm founded or headed by a man who is chair-bound?  How sad that the company apparently now has a philosophy of protecting its own rear from litigation rather than truly serving the needs of their disabled customers.  Their attitude about not selling parts to customers is chilling…..they wield the big stick and seem to intimidate their dealers.  I’ll keep digging, but I see your point about maybe having to shop the internet, which is scary.  Most of the encouraging links led right back to Edmonds!!

 

 


From: Scott Royall [mailto:royall@conchbbs.com]
Sent: Tuesday, April 01, 2008 9:03 PM
To: Scott Royall
Subject: FW: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

 

Interesting. Yet, I admit to being jaded enough to have a couple of questions raised by the article. First, frankly,  is Jemma really doing the typing, or is Mum? Sorry folks, but I’m reminded of stories of horses that did math so this question will always “nag” unfortunately. If Mum really is just steadying little Jemma’s arm, this seems like a perfect opportunity for a creative bit of engineering. Moreover, the nature of Cerebral Palsy is such that, no matter how limited our fine muscle control is, we retain what’s called “muscle memory.” That’s a fancy way of saying “practice makes perfect”—or at least “much better” in our case. Jemma may be facing years of tearful struggle, but rewiring your brain isn’t a quick process. CP sufferers do face much greater limits than most people, but those limits are often less rigid than they appear.

 

My other question is longer term. To be certain, being an eloquent writer is a huge asset in school. I know from direct experience that a disabled student who can write very well makes his or her teachers swoon. J However, the rest of the world is much harder to impress. Does Jemma hope for a writing career? That’s certainly possible, but it’s a trek up Everest. Writing of the caliber you can live on comes from what’s usually called “life experience,” and you don’t get that if you’re alone. Jemma should find another marketable skill and perfect that for earning, and then hone her writing. I say that because there is a local woman named Ramsey who is very much like me physically. We went through the same university after being trained as writers. In college, our paths diverged with my switch to computer science. Her writing won awards. The last I heard of Ramsey was a few years ago, and she was too poor to afford a decent AAC device. I’m sure the rehab agencies weren’t eager to help her because writing isn’t very marketable.

 

From: DSloan [mailto:djsloan25a26@yahoo.com]
Sent: Tuesday, April 01, 2008 5:33 PM
To: Scott Royall
Subject: Re: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

 

Scott ..
  Didja see this in the Houston Chronicle?
http://www.chron.com/disp/story.mpl/moms/5658069.html

March 28, 2008, 11:31PM
Cerebral palsy can’t stop 10-year-old’s winning writing
Girl limited in movement, not imagination, wrote her way past 1,600 other children to win an essay contest

By ALLAN TURNER
Copyright 2008 Houston Chronicle

RESOURCES

THE WINNING ESSAY

 

A Hawarden Grove Christmas

By Jemma Leech

I remember in London the winters were warm and wet. No snow or ice, just rainy gumboot-puddled walks in Brockwell Park, while the summer-packed paddling pool filled of its own accord with rainwater, autumn leaves and rainbows of crisp bags.

We disappeared in the secret garden underneath palisades of sleeping creeping clematis and wisteria, swapping the dry dark with the wet light as we trailed the paving maze to the fishpond at its heart.

Blackbirds waded in patches of newly dug earth, taking worms from the mud as an avocet might from a turning tide-bare beach. A robin called to me from the crumbling wall, saying ‘spring will be here soon, believe me, believe me.’ His red chest puffed out with pride as he sang me a song of love and fidelity. Flattery became him as I cried at his song, and he flew off knowing I’d believed in his truth. From the far end of the garden, I heard him begin his flirtation again with another open heart.

From the top of the hill in the park we had watched fireworks break out all across the city that Fifth of November, as if in domino from common to common. But on that Christmas Day the mist had come down, the park was an island and we were cut off from the mass of humanity beyond the mist. It was just me, my brother and sister, and our weary parents inhaling the fog like perfume on a cloud of silage steam grateful for the relief it brought from the stench of London. That mist-bound land was our kingdom that day, and I was its princess, adorned with a crown of diamond drips and drops, soon dried by the warmth of our terraced palace on Hawarden Grove.

”I am Jemma and I am immortal!"

Thus begins the one-page autobiography of Houston fifth-grader Jemma Leech who, though cerebral palsy has left her little control of her body, lives in a vivid world of images and words that modern technology now is beginning to let her share.

"Written words are for me the glue which keeps my existence held fast in a semblance of stability," she writes. "Without words, it would all come crashing round my ears, turning bright sunshine into darkest night. Poetry fills my soul with delightful hues of life’s momentary escapes into bliss, and torment. Language is my paint and my keyboard is my brush."

Today in London, 10-year-old Jemma will be named first-place winner in the 16-and-under category of the prestigious "Write Up Your Street" competition. Jemma, a student at Mark Twain Elementary School, beat more than 1,600 entrants in the contest.

A London native who until a year ago lived with her family in Wales, Jemma will not be able to attend the ceremony. But in a videotaped acceptance speech — her voice synthesized by a computer from words she types using a xylophone stick — she credits her teacher, Pansy Gee, with teaching her "to let my readers see what I see and feel what I feel."

Mark Twain Elementary is a Houston Independent School District magnet school offering a literary development program.

"She wows me," Gee said Friday. "This child has an amazing ability to express thoughts, feelings, visual pictures that have been locked in her head. As a teacher, it’s almost daunting. She’s better at it than I am. I can’t do that, and I don’t know many adults who can."

‘Stunned us’

"Jemma Leech’s winning entry … stunned us all with its imagery, craft and finesse," a contest judge said of Jemma’s essay, a description of a winter scene near her former London home. "The fact that Jemma is just 10 years old makes her talent burn even more brightly. It is the one entry that inspired a unanimous decision — Winner!"

Jemma, daughter of Caroline and Perryn Leech, moved to Houston last year when her father took a job as technical director of Houston Grand Opera.

Jemma, her mother recalled, wasn’t breathing after birth, and spent six weeks in intensive care before being allowed to join her parents at home. The couple knew their child might be vulnerable to developmental problems. And at 1, when it was apparent that she couldn’t sit up unaided, Jemma was diagnosed with cerebral palsy — a disease that affects muscle control.

Jemma, her mother said, was a bookworm from the start.

At an age at which most children would be toddling about the house, Jemma would spend hours flipping through books. At 3, she joined her father in reading the daily newspaper.

"Her grandparents would see her with the books and say, ‘Look, Jemma’s reading,’ and we’d laugh," her mother said. "We’d show her all the pictures, the crosswords. We knew she was with us. There was a brightness in her eyes, a wickedness, and she’d laugh."

Until about age 5, Jemma’s communication skills were limited to tapping out codes for "yes" and "no." Then one day, as Jemma’s mother worked with her daughter with flashcards, the child began using them to spell words.

"I went running across the road yelling, ‘Guess what Jemma’s doing?’ " Caroline Leech said.

In the weeks that followed, Jemma, as her parents steadied her hand, typed out poem after poem, story after story, on the computer keyboard.

"Poetry is one of her big things," her mother said. "She can write poems in a few words to say the same things that would take a few paragraphs. She has the power of language. She just loves and revels in words. I have to go to the dictionary."

Musical ambition

Jemma’s mother believes the girl’s musical talent may equal her literary skill — but to date there is no way to hear the compositions.

"My heartbeat is written on a stave, with crescendos and diminuendos, tacit bars and heart-stopping glissandos," Jemma writes. "But my breath is the libretto, with such glorious poetry and anarchic rhyme that I can’t make sense of it at all."

In darker moments, Jemma writes about how others perceive her.

" ‘How can you,’ they say in hushed tones, ‘read, write and think like normal people do?’ " she writes. " ‘Surely that mother of yours is just making it up and should stop telling fibs.’ Well, d’you know? I do have a brain and I do have a mind — and the imagination of Dahl, the poetry of Keats, the drama of Shakespeare, the music of Verdi and the passion of them all in one."

For her essay, Jemma will receive about $800 in books from a London bookstore.

An additional $800 in books will be split between Mark Twain Elementary School and the school Jemma attended in Wales.

allan.turner@chron.com

 

 

==========================================
DJSloan .. Houston, Texas
DJSloan25a26@Yahoo.com
Reference:

 

—– Original Message —-
From: Scott Royall <royall@conchbbs.com>
To: Scott Royall <royall@conchbbs.com>
Sent: Tuesday, April 1, 2008 2:58:05 PM
Subject: FW: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

Oh boy, how did I end up on this list? I don’t know if I can go, but it would be nice.

 

From: v mason [mailto:vcmason1995@yahoo.com]
Sent: Tuesday, April 01, 2008 12:58 PM
To: royall@conchbbs.com
Subject: Assistive Technology — TOTA Annual Mountain Central Conference – Nov 21-23, 2008

 

Texas Occupational Therapy Association Mountain Central Conference

November 21-23, 2008

Renaissance Austin Hotel, Austin TX

 

Submit a presentation for our Assistive Technology Track

and/or Book your Booth now to reach OT professionals statewide

 

Why wait? Start making plans now to join us at MCC 2008

 

Vicki

 

Vicki Mason

vicki@tota.org

Vendor Services, TOTA

 

 

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