Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Sunday, November 30, 2008

Your local paper from India?

It's becomming apparent that the list of jobs that can't be outsourced to India is dwindling.

But your local news being written half way around the world?

The end is near!

Saturday, November 29, 2008

Genetic test to find out what sport junior should pursue?

New genetic test asks which sport a child was born to play - International Herald Tribune

E like baseball from the start. Age four, tee ball. Bat, glove - no idea what to do, but E and a team of preschoolers were figuring it out together. Abby hit the ball better than many of the boys. The garbage man's son did cartwheels in the outfield; he had way too much energy just to stand there. E did all he could to follow the coaches word. He liked baseball and continues playing to this day...and he is good at it.

Basketball for E started in the first grade. He played for the "Y". Dribbling the ball up and down the floor looks easy, but watching kids learn it is priceless. It's not that easy to start, but as they learn and practice, their moves become smoother and more natural.

Indoor soccer did not go well. A bunch of kindergartners running every which way. Confusion! Fun to watch, but E did not care for it.

Eric played football in the 3rd, 4th, and 6th grades. Football was hard for E. He does not like to get hit. Even so, E worked hard to succeed at it. He was a lineman and a kicker. He did well, but he just didn't like it. I liked the discipline of football - every player has a role, and every role needs to be executed for the team to have success. He skipped the fifth grade football. He was the one getting hit. We left the decision to him. He played football again in the 6th grade, but decided to take a pass on it this year.

The ugly part of kids sports is that kids want to have fun, but parents want their kid to be the best. The sports camps start at a young age anymore. We have striven to only have E participate in sports and sport camps when he wants to. Sometimes he is not sure, and we have to be "parents" and nudge them.

The thought of genetically testing kids to see what sport they would be best inclined for frightens me. I can see parents forcing their kids to do only that sport. I overheard a boy's father (E recently played baseball with him) say that his son played in two baseball leagues at once. Perhaps the boy liked it, but did he like it for himself, or for his parents?

The line is hard to figure out. Kids want to like what we like. Sometimes they will force themselves to "like" something to not disappoint us.

Trial and error seems to be the best way to figure out what your kid likes to do. The process of struggle and achievement teaches a valuable lesson of life. Genetic testing to circumvent such lesson seems like it could lead to disappointed parents and resentful kids.

Friday, November 28, 2008

Lesson from Down Under - child care collapse

Working parents finding decent child care for their kids at a price they can afford is a struggle.

It appears that Australia's government somehow helps parents afford day care by contracting with a private company, ABC Learning  Centers.  But now ABC is in trouble.

ABC has more debt now than they can repay.  The company cares for a quarter of Aussie kids in day care.   The government now must consider bailing them out.

The clamor is always to privatize government services as a was to improve effectiveness and save money -- a win-win.

Now the pendulum is swinging the other way.  Government stability trumps private boom and bust?

Caught driving with no arms

Interesting story out of China.

The police did not seem to know what to do with this guy steering with his knees.  He lost his arms in an industrial accident.

They arrested him, even though he says he drives safer now than when he had arms.

Wednesday, November 26, 2008

Bill for Senate?

I like this idea.  

Despite his faults, I always appreciated his smarts and his energy.  In this Dem rebirth, why let his talents  be wasted?

Monday, November 24, 2008

Bush to blame?

I've been trying to explain to E that President Bush is not to blame for everything that has gone wrong in the past eight years, and then Leanard Pitts goes and writes this:

For my money, of all the things he has done that have damaged this nation -- we're talking lies and alibis, torture, the loss of American prestige, watching passively as New Orleans drowned, censoring science, politicizing the Justice Department, a ruinous war of choice in Iraq, spending with all the discipline of an 8-year-old in a candy store -- arguably the most damaging legacy this president leaves is that he has undermined truth itself. After eight years of Bush/Rove politics, we live now in a nation where fact doesn't mean a whole lot, where it is OK to believe the ''truth'' that serves your political ends and jettison any that does not.

Because these days, truth comes in two flavors. We have red truth and blue truth, but we are fresh out ofthe truth, the facts, unimpeachable and inarguable. Instead, Bush has overseen a government of legendary intellectual incoherence, where ideology is valued above competence, accountability is valued not at all and one is daily dared to believe the evidence of one's lying eyes. Bush seems to agree with Stephen Colbert: Reality has a liberal bias.

It happened again...

In 1989, I wrote a column for the Oregonian about a grandpa who took his two year old grandson, who had significant disabilities, for a ride in the car. Grandpa took the boys life and his own. For whatever reason, grandpa did not see much hope for the boy.

I was eight months old when doctors diagnosed me with cerebral palsy. Doctors did not know what hope to give my mom as to what my life would be like.

At first, when I read this story out of Wisconsin, I saw similarities with the story I wrote about in 1989. Instead of a grandpa taking the life of his two-year-old grandson and his own, this was a father taking the life of his twelve year old high needs, severely disabled son.

This has been a difficult post for me to write. Back in 1989 when I wrote about the grandpa and the two year old, I had a three inch news brief to go off. Without the internet around to let me dig, I made assumptions. The biggest was thinking that grandpa took his grandson's life and his own to save family and society the hassle. I related to the story that I was once that two year old with disabilities and an unsure future.

Before I write about Ryan and Kyle Dutter, I just want to say that I have no doubt the grandpa loved his grandson and wanted the best for him.

Ryan Dutter loved his son, Kyle. He created a website about his son.

There is much more to this story than I will ever grasp.  Unemployment, bankruptcy, and custody issues...not really our  business to consider.

Take a look at this page from the website Ryan made for Kyle.  It is a lengthy list of specialists who were caring for Kyle's needs:
Psychiatrist – (behaviors, issues still 
ongoing, but significantly better)
Endocrinologist- (puberty, monthly shot being 
administered to control heavy onset of 
puberty naturally produced at my age)
Ear-Nose-Throat-(drooling, minor surgery more drooling!!!)
Pediatrician- (now have one, and this one 
specializes in Autism)
Orthopedist-(Half leg braces for feet and legs 
being used to help me walk better)
Neurologist- (Seizures under control at 
present time)
Dentist- (minor surgery completed, all dental 
problems solved)
Sleep Study- (sleeps 14 hours a day with 
naps included, hoping to know if I am not 
obtaining REM sleep)
Occupational therapy- (helping him move, 
especially lower body so there is no falling or 
tripping.  Right foot is severely turned inward.  
This is in addition to his school therapies)
Rehabilitation M.D.-(Oversees coordination 
of all my care)

There are too many details about this tragedy that I don't feel qualified to comment on  any of the speicifics here.

In general, high needs kids should be the responsibility of society, the "village" if you will.  Too much or too little money should not prevent families from having a child's high needs met.

When I use to process applications for medical assistance for the state, I will never forget talking to a lady who had a teenage daughter with cerebral palsy.  Mom was a few bucks over income from qualifying for assistance.  I felt so bad that I apologized to the lady.  She was crying, but she said "It's not your fault, sir."  I still felt bad.

I know there is a reason for eligibility specialist who make these difficult decisions.   We don't have unlimited resources to cover all the needs that exist.  

If we can bankroll the Iraq war, Wall Street, Citibank, Detroit automakers (?), it seems to me that high needs kids and their families deserve more support from society -- medical coverage, 
case management, whatever support is needed.

Why don't we honor Kyle Dutter by making a law that provides support for high needs kids and their family regardless of their means?

We need a Kyle Dutter law.

Wednesday, November 19, 2008

Didn't Bush Sr. usher in the ADA?

Jr. is snubbing it:

The Americans with Disabilities Act would be weakened by permitting state and local governments to make only a fraction of their public facilities accessible to the handicapped.

Video game simulates disability

What a wonderful way to reach kids with the important awareness of the challenges we face as people with disabilities.

Teen girl...professional baseball?

She has a mean knuckleball.

Monday, November 17, 2008

"A" for presenting disability awareness to kids

Ubisoft game simulates disabilities « Sweet Perdition

Does Handigo The Game do everything I hope a virtual disability simulation would do? Of course not—for one thing, it represents blindness as darkness that lights up as the player navigates. But it’s an interesting first step, one that shows disability as a natural part of human experience. I hope the game is a harbinger of things to come.

I think it's a wonderful attempt to reach kids where they are at.

Prayers for this little Troy

Gran’s joy as the money pours in to help little Troy (From Worcester News)

Very cute little guy across the Pond...

"Charge it!" at the kettle

No cash? Colo. Salvation Army tests plastic at red kettles | Front page | - Houston Chronicle

Saturday, November 15, 2008

CP'er completes the PGA tour

I'm not a huge follower of golf, but I always check in to see how Tiger is doing.

I missed this story:

Sky News: Wheelchair bound man completes PGA

Here is a video:

Here is his blog. Note the ongoing tally of number of sodas and number of falls.

I can really identify with DJ!

Miracles sometimes require a trip back to the drawing board

Six year old Mustafa has become a symbol of hope for Iraq here in the Northwest.

Four years ago his leg was blown of during fighting in Fallujah. A couple from Portland brought him here to get help.

Great people making a difference.

Badly injured Iraqi boy fit with artificial leg at Portland hospital - Breaking News From Oregon & Portland -

Iraq war; Third grade perspective

Thank you, Andrew:

The Daily Dish | By Andrew Sullivan (November 14, 2008) - The Iraq War Debate

I was a teen when this happened

I did not fully understand then how this could happen, and I don't really understand it now:

Former temple followers move on, 30 years after Jonestown -

Boys' day...

E is really into James Bond these days. We currently have the 007 movies OnDemand and he has seen several of them.

Last week, we got E's report card. Straight A's. To celebrate, he wanted to go see "Quantum of Solace". On the radio yesterday morning we heard a reviewer give the movie a thumbs down.

"I still want to see it, Dad."

Today, after the morning basketball camp, we went and saw it.

We both liked it. E nudged me a few times during the movie to let me know what different characters had done in previous Bond installments.

In the past I have gone to see "guy movies" with my friend Brad.

This was the first such movie E and I have taken in, just the two of us.

It was a big deal to him. It was a big deal to me.

'Solace' posts Bond's best opening - Entertainment News, Film News, Media - Variety

Thursday, November 13, 2008

Newspaper irony

I like reading Leonard Pitts' columns. He writes for the Miami Herald, but I use to read it in The Oregonian. Since I know longer have time or patience, and I stopped subscribing to, The Oregonian, I catch Leonard's column online, more specifically, as a RSS feed through Google Reader.

Herein lies a problem, the death of the local paper, according to Pitts' recent column. I read the column online, discussing how online news is killing the local newspaper. Irony.

I don't wish to see the local paper die, but reading papers online is much easier for me. I peruse the New York Times, The Washington Post, Wall Street Journal, and many others. Interesting headlines catch my eyes. Another thing I have against the paper newspaper is that the news is at least six hours old.

Here is news I can hardly believe, the eminent demise of the New York Times.

I know we need to put up with ads to support online news sites, but please stay away from the annoying popup ads, and the long intro screens that force you to watch or read an ad.

There probably is not the online ad revenue available to support the local newspaper staffs of the past. Then again, there are now bloggers on every corner to provide more localized news than ever before, if you know how to dig for it.

Wednesday, November 12, 2008

"It would be my honor to assist and support our new president and the new administration," said Palin...

Hmm...what could Obama have Palin do?

Obama's White House to reflect importance of Grandma

'First Granny' Readies For White House Move

Second and third graders...

Chanting threats against said.

REXBURG, Idaho -- Elementary students chanted "assassinate Obama" on a school bus in eastern Idaho last week, an official with the Madison School District says.

District spokeswoman Janet Goodliffe says the second - and third-grade students were young and most of them didn't understand what the word "assassinate" meant when they chanted it in reference to President-elect Barack Obama.

Tuesday, November 11, 2008

Bush: 'I regret saying some things I shouldn't have said' -

The human side of President Bush. I doubt his popularity numbers would be so low if we saw more of this humility:

Bush: 'I regret saying some things I shouldn't have said' -
"'I remember the conversation I had with my predecessor Bill Clinton,' Bush said. As a matter of fact, [I] called him yesterday and said, 'Bill, I'm getting ready to meet with the new president, and I remember how gracious you were to me. I hope I can be as gracious to President-elect Obama as you were to me.' ''"

Obama slurs at this school taken serious

Salem students punished for racial slurs | - Portland, Oregon | News

I have trouble thinking that kids come up with this stuff alone. I wonder what they hear at home and in their circle of friends.

I know the frustration that the Republicans must feel right now. They lost...bad. The last eight years have been that way for me, when the Democrats could not find a message or a win.

Turning to slurs does not turn a loss into a win.

We need to remain faithful to our message and prayerful for our leaders.

We need to teach our kids to do the same.

Churches react to Obama win

From Some churches are sad, some are elated:

blog post photo

Reaction to an Obama presidency has been swift and voluminous in churches across America. Here's a sampling of sermons and marquees:

"Exiles in an Obama Nation" marquee of Gracewood Baptist Church, Southhaven, Mississippi.

"God, Help Us" marquee in front of United Methodist Church.

"God has vindicated the black folk. Too long we've been at the bottom of the totem pole, but he has vindicated us, hallelujah...Because when I look toward Washington, D.C., we got a new family coming in...and you know what? They look like us. Amen." Shirley Caesar, Gospel recording artist and pastor of Mount Calvary Word of Faith (Raleigh, North Carolina).

Water bombed?

Last Friday after work I was driving nortn on SE 148th, approaching Stark St. in Portland.  I heard a explosion, and my windshield was covered with water, as if a barrel of water had been shot it Jet White.

I was frightened by the noise and by the amount of water.

It was loud like a firecracker; very startling.  

It was a huge amount of water that came from the front, driver's side, and the direct hit was my front line of vision.

I saw police headed that direction when I turned off 148th, but then I saw police everywhere that night.

It had to be more than a water balloon.

Kids with a water cannon?   Were they trying to cause me to crash?  Any ideas?

Monday, November 10, 2008

How did she get there?

Missing Child, 1, Found Under Floorboards - Portland News Story - KPTV Portland

Obama facts...

This is fun:

Barack Obama: The 50 facts you might not know - Telegraph

A sober view of W

George W. Bush: A tale of two terms » The Journal

It is remarkable how quickly the Bush presidency unravelled. It is difficult to argue contrary to the failure hypothesis, but it is important to make a distinction between Bush’s first and second terms...

A sober view of W

George W. Bush: A tale of two terms » The Journal

It is remarkable how quickly the Bush presidency unravelled. It is difficult to argue contrary to the failure hypothesis, but it is important to make a distinction between Bush’s first and second terms...

Moderates after my heart

Arnold Schwarzenegger urges GOP to move beyond ideology - Los Angeles Times

Great sense of humor:

The governor deflected a question about whether McCain had displayed bad judgment in selecting Gov. Sarah Palin of Alaska as his running mate.

He also said that California First Lady Maria Shriver, a Democrat and a member of the Kennedy family, had been running around their house since Tuesday with a cardboard cutout of President-elect Barack Obama, gloating over his victory.

Schwarzenegger, who joked about Obama's "scrawny" physique while campaigning with McCain, said he was "proud" to see the American people elect their first African American president.

"I was touched by it," he said. "Democrats and Republicans should do everything they can to help this man and his administration to be successful."

But he said rumors that he would leave his post as governor to work in the Obama administration were not valid.

Interesting way to buy a house...

Couple Raffles Off Michigan House - Money News Story - KPTV Portland

Dasani water from the Willamette

Cachet bottled water soon may come from Willamette - Breaking News From Oregon & Portland -

Locals know what happens to the Willamette when the storm drains overflow.

I won't ruin the Dasani experience for the rest of you.

Perfume disability?

MCS America ©: New Disability Accomodations Webpage for MCS, CFS, FM, and Fragrance Senstivity

Latest disability category: Multiple Chemical Sensitivity.

What happen to allergies?

Saturday, November 08, 2008

"In the name of no father"

Interesting title to an article in the Gresham Outlook.

A T shirt they sport says "Your Friendly Neighborhood Atheist".

Morality does not depend on there being God, or a god.

I can see the attraction.  I am good because I am good, not because God is going to pound me if I am not good.

By equating religion to guilt, I suppose that not believing in God is freedom.

“As a Unitarian, I think we would not ridicule somebody else for their beliefs,” Knox says. “We’re humanitarian. We believe in compassion.”

Which is one reason why Tuppman, for example, says she’s never liked the Christian story of a loving God sending Jesus to die on the cross for our sins, nor for that matter, the doctrine of original sin, the idea humans are conceived in a state lacking holiness resulting from Adam and Eve’s fall.

“I didn’t ask to be born, and I thought why should I have guilt on top of it,” Tuppman says.

I don't have enough faith to believe that God does not exist.  I am not comfortable enough to believe that my own personal morality is all I need.

God loves me.  God loves you.  

I don't have enough faith to believe otherwise.

Happy 90th Billy!

Billy Graham turned 90 on Friday.

He is stepping down from his longstanding rol e as pastor to the President, but promises to pray for President elect Obama.

I would not have guessed that he is a registered democrat.

Thursday, November 06, 2008

Obama said the "D" word

He did not have to mention the disabled (yes, us!) in his acceptance speech, but he did:

"It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled – Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America."

Prayers for Obama

The Presidential Prayer Team:

I hope this link works for you. Prayer is part of my life...not as big as part as it should, I'm sure. St. Paul told us to pray for our leaders.

For the past 7(?) years, PPT has seemed pretty Republican. Gee, I wonder why?

Today's edition has congrats and prayers for president elect Obama from Billy Graham (happy 90th), Mike Huckabee, Colin Powell, Chuck Colson, Peggy Noonan, and Pope Benedict XVI.

I have talked with people who fear with me the "Kennedy" feel of this being too perfect...that something bad might happen.

One of E's classmates even had the gall to hope that someone "just gets it over."

Obama will fail if he is alone.

I have always prayed for President Bush. Please join me in praying for President Elect are not alone...and you will succeed!

Wednesday, November 05, 2008

Disabled employees in the Air Force

Air Force disabled employees vital to mission

When I was a senior in high school, I was barraged with military recruitment mailings. I thought there should be military job opportunities for the disabled. I called. There was not.

I guess there is now...

Tuesday, November 04, 2008

Leonard Pitts: 'We' are finally part of `We the People'

Leonard Pitts: 'We' are finally part of `We the people'

Leonard says it so well:

There was something bittersweet in watching Michelle Obama lectured on American pride this year, in seeing African Americans asked to prove their Americanness when our ancestors were in this country before this country was. There was something in it that was hard to take, knowing that we have loved America when America did not love us, defended America when it would not defend us, believed in American ideals that were larger than skies, yet never large enough to include us.

We did this. For years unto centuries, we did this. Because our love for this country is deep and profound. And complicated and contradictory. And cynical and hard.

Now it has delivered us to this singular moment. Barack Obama is president-elect of the United States.

And we the people should be proud.

Obama elected 44th president - Decision '08-

Obama elected 44th president - Decision '08-

A dream come true.

Tears of joy and prayers of hope.

26 mile smile

Update on the New York marathon run by Nadine and Tyler McNeil.

EARLY FINISH Nadine McNeil, 42, who had a stroke when she was 8 and lost the use of her right arm and right leg, competed in the handcycle division of the marathon and finished in an unofficial time of 3 hours 54 minutes 59 seconds. Her 18-year-old son, Tyler, who is autistic, made his marathon debut, running a time of 5:07:48.

But McNeil missed her son’s finish. She said she thought his time would be about six hours, so she was nervously waiting in a finishers’ tent at 72nd Street and Central Park West. As she was about to head back to the finish line, Tyler arrived with his guide.

“My friends said he had a smile on his face for all 26 miles,” McNeil said. “I couldn’t be prouder of him. I would have been proud of him if he had run 50 feet and stopped.”

Portland delays disabled-parking decision

City delays disabled-parking decision

Tough issue. Needs of business versus needs of disabled.

Limiting disabled parking to four hours would help business.

We need a compromise. I worked in downtown Portland for 2 years. I took advantage of free parking using my disabled card.

Charge disabled workers a fee they can afford.

For disabled shoppers and visitors - sprinkle disabled spots around downtown. Pay once, lower the price, 4 hours.

Making anything free leads to abuse.

I know this is not the solution, but it is the kind of thinking we need to reach one.

First results...

BB's community manager beats MSM on breaking tiny but neat-o election news - Boing Boing

Monday, November 03, 2008

Barack's Grandma - Rest in Peace

Madelyn Dunham’s vote will count

I felt bad when I heard that Barack's grandma had passed today, the day before her beloved grandson's great day. A grandma's pride is hard to beat.

Athiests advertise

Ariane Sherine: All aboard the atheis1t bus campaign | Comment is free |

"There's probably no God. Now stop worrying and enjoy your life"

Interesting...they seem uncertain...

"Life is too short to be sad"

Volleyball player with epilepsy welcomed at CLU : Volleyball : Ventura County Star

"You go through times when you are very depressed, like when you have one seizure after another," said Hayes, who isn't allowed to drive because of her condition. "I have spent many times crying. But now that I am older, I have to understand there is something wrong with me, but life is too short to be sad."

Epilepsy is a hidden disability that, when a seizure happens, makes you the center of attention.

Openness and acceptance...wonderful story.

A perfect movie

Viet Nam News

A "nutty inventor" refusing to sell his inventions, opting to employ the disabled.

Inspires me!

Changes to the ADA

Americans with Disabilities Act will implement changes | ®

I confess, I am not as educated on the Americans with Disabilities Act as I should be, but some of the changes are interesting:

• "Disability" will be defined as "Physical or mental impairment that substantially limits one or more major life activities, a record of such impairment, or being regarded as having such impairment."
• "Physical" disability will be defined to include disfigurement, loss of function (reproductive, cardiovascular, skin disorders, endocrine system, urinary).
• "Major life activity" will be defined to include: walking, seeing, hearing, speaking, learning, performing manual tasks, sitting, standing, lifting, caring for oneself and working.
• A qualifying "mental disability" will include psychological disorder, organic brain syndrome, emotional or mental illness and learning disabilities.
• The term "substantially limits" means "unable to perform a major life activity that the average person in the general population can perform."
• "Being regarded as having an impairment" has been defined to mean an "employee is subjected to an action illegal under the act" and "because of an actual or perceived physical or mental impairment" and "whether or not it limits a major life activity."
• "Major life functions" will include: eating, standing, lifting, bending, reading, concentrating, thinking and communicating.

Sunday, November 02, 2008

Book that should never be written...

Compliments of Fark:

A car that flys?

I'll take one...

Flying car based on Ferrari 'could be reality within two years' - Telegraph

National Daily faces 21st century reality

I majored in Technical Journalism when I went to Oregon State University in the 80's. The internet was telnet, black and white screen, bulletin boards and email for geeks.

Whoever foresaw news "papers" becoming obsolete? But, here it is:

Monitor shifts from print to Web-based strategy

I am a news junky. I recently quit receiving home delivery of The Oregonian, opting only for the Sunday edition. On my desk I have a renewal bill for my local community newspaper, The Gresham Outlook. I read it online now. It is easier for me, with my disability, to navigate my way through the online version than through the paper version, but part of me hates to see the community "paper" go away.

Online news sites: please move away from login requirements. I want RSS feeds of my favorite columnists without that hassle!

Saturday, November 01, 2008

Marathon for diabled mother and son

This Journey Began Before Starting Line -

Nadine had a stroke at age eight, losing the use of her right arm and right leg. She uses a hand cycle, and uses duck tape to keep her right hand on the pedal.

Tyler, her son, is autistic and the love of Nadine's life. He has a severe speech delay. A hoopster, a special olympian, and now a marathon runner.

Nadine will be passing by Tyler tomorrow in the New York City Marathon.

Here's to Tyler's first marathon!

Should mentally disabled be allowed to vote?

GOP Thinks Mentally Disabled’s Votes Shouldn’t Count - World of Psychology

Analyzing a person's mental fitness to vote.

I don't thinks I'd pass the GOP's test.

I see a wild ride down that slick slope.

I was entertained

Check out this video from Cute Overload: