BADD 2011 - Be aware of My Best Buddy

To be honest, it is hard for me to be honest.  I am a glass-half-full kind a guy.  I like to tell people what they want to hear.

Life goes easier that way, people are happier.

In my college days, I had a weekly column in the Oregon State University "Daily Barometer" titled 'Witticisms' - imagine that!  My thought was that if I could get people to smile, or feel anything, I could get them to think.

One time, it was disability awareness week.  I felt a burden to promote the awareness.  I was up all night.  I was ranting and raving about accessibility problems around campus, and how tough it was to be disabled and going to college.  I looked at what I had and I realized nobody was going to read my angry words.

I took a different tact.  I took my readers, sat them down, and gently put a pair of my shoes on their feet.   I told a story of my best buddy.  I told of some of the obstacles that my best buddy faced in the course of the day and the ways he got around them.

People who knew me knew right away who "my best buddy".  They were affected by my words.  The sports editor, who I barely knew, called me and told me how much he like the column.

My best buddy.  Twenty four years out of college now.  Twenty one years working as support staff for child welfare.

Life has been good to my best buddy.  Twenty one years ago he married a girl he had met at a elementary school for disabled kids.  Their life goal was to not have kids, but to take care of each other without relying on outside help.

Five years later, God surprised them with a son.  Family and friends were there to help.  The pregnancy, birth and early years, but there was never a lack of love and support behind them.

One time my buddy and his wife tried to by a lot in Beaverton on which to place a manufactured home.  The owner would not sell it to my buddy and his wife because he did not think my buddy could work, even though he did have a job.

On the other side of the spectrum, a few years ago when my buddy and his wife needed a larger van to haul both of their scooters, my buddy found the perfect van on the internet.  My buddy, his wife, and their son drove to Seattle to look at it.  It was decked out with a ramp and restraints.  It was expensive,  but the dealer and the bank worked things out.   A week later the van was their's, one of the simplest transactions in their lives.

My best buddy's wife is now in a powerchair full time now.  At first she felt that laying down her crutches was a form of giving up.  It has proven to be a much greater level of independence for her.  Even so, it has been a surprise to her how many local business don't have automatic doors.  She has to struggle with the door herself, or wait for the kindness of strangers to help.

My best buddy uses a walker much of the time these days.  It bothers him sometimes when people are in such a hurry to get around him that he does not have time to get out of their way.  It bothers him that walkways are narrow and/or cluttered in such a way that hurried people can't get around him.  It bothers him that he always needs to get out of the way.

Forget being aware of my best buddy's disability - be aware of my best buddy!

This is my contribution to Blogging Against Disableism Day 2011.

World's Last Typewriter Factory Closing Its Doors | News & Opinion | PCMag.com

World's Last Typewriter Factory Closing Its Doors | News & Opinion | PCMag.com

Momentous day. Last typewriter factory closing.

I learned to type when I was seven at Holladay Center. My handwriting would get me nowhere fast...I can barely read it!

When I was mainstreamed in the fifth grade, a typewriter followed me from class to class. In high school, my typewriter was in the special resource room.

At home I had my brown IBM. I used the white paper corrector stuff...such a mess! I then got a Facit self-correcting. In college I always had to make special arrangements with my professors to use a typewriter for tests.

The hassles of disability. Such an understatement. Gotta embrace it and roll on...or you go crazy.

In my work life, I have had a typewriter follow me around. Now that the IV-E adoption assistance and guardianship assistance forms are finally on the computer, I really have no use for it. And we no longer have a contract for getting it fixed.

The only thing I handwrite now is my signature on those pesky receipts. For any other handwriting I need to gulp down my pride and ask for help.

The end of an era. I would not have gotten where I have without this technological bridge to the computer.

I finally got one...

I have wanted a Kindle electronic book reader for years.  Mom got one for my stepdad, John.

I have been using the pc version of Kindle on my netbook for awhile.

My reason for not getting one for so long is that I don't read a lot of books.  I consume news and blogs.  I am addicted to Twitter, Facebook, and Google Reader.  On my Twitter I follow many news outlets, reporters, and favorite people.  Google Reader I follow disability feeds, google trends, national and local feeds.  On Facebook I follow family and friends.  I find out more about what's happening at work off Facebook than anything I hear at work.

I am an informational junkie.

Any books I read are non-fiction - "Angel Face" about Amanda Knox, and "The Case for God".  I am not that good of reader because  I speed through everything.  I am just looking for the facts.

Well, my new 3g Kindle has surpassed all my hopes.  I did not realize that I could access the internet with it.  It handles Twitter, Google Reader and Facebook wonderfully, and the mobile connection is free!   My Gmail is not very easy to navigate on the Kindle, though I did finally find the best link to use.

The keyboard on the Kindle is not very "Troy" friendly.  Punching in my passwords is not as easy as I like.  The mousepad is small and tricky for me to use.

Even so, my Kindle is proving to be quite the dream for this info junkie.

Eric and the order of the towel

This is Holy Week.  Tonight we had a Maundy Thursday service at church, a commemoration of the Last Supper.

Three of our high school freshman, including Eric, took part in washing people's feet.  These kids have been through a peer ministry course, equipping them to listen to and serve other kids their age who need help.

Eric and Robert were at one of the foot washing stations.  Jodie went up in her power chair.  Eric took one of her shoes off and they washed her foot.  Jodie does not have toes; she has a couple stubs.  A big reason she has had to use crutches her whole life is because she does not have toes.

It took courage for Jodie to go up for a foot washing.  Just as the disciples were not all that comfortable with having Jesus wash their feet, neither was Jodie with having her son and Robert wash hers.

Jesus set the example of what it is to be a servant of all, pretty much opposite everything our culture sees as success.

Tonight Eric earned his towel; success that is out of this world.

Being disabled in time of trauma

Being disabled is never a picnic, but sometimes it can be really frustrating and downright scary.

People who know me can generally understand me. Throw in some trauma and people who don't know me and...well...lot's of luck.

Ten years ago when I had back surgery, I was recovering I the hospital. I needed help with something. I hit the call button and said "I need help. " All I got back was "We can't understand you sir." With cerebral palsy, the harder you try to talk, the worse it gets. Involuntary motions.

Help never came. When Jodie came in, she was furious.

Marriage is about pooling strengths. Throw in disabilities, like CP, as in the case of Glenda and Darrell, and Jodie and I, marriage goes beyond convenience. We depend on each other. We use our abilities to overcome the other's disabilities...if that makes any sense.

A few patients and accompanying companions followed the nurse into the secured treatment area. The nurse indicated that Darrell would have to go back to the waiting room because there wasn’t room for two wheelchairs.

Darrell explained that I needed him for speech purposes. But, once he relayed how the injury occurred and other necessary medical details, he was told to leave. The nurse assured him that she would come get him if he was needed. None of the other companions were forced to leave.

Do It Myself Blog – Glenda Watson Hyatt » The Foot as a Brake: Do Not Attempt This at Home

Healing and peace my blog buddy Glenda!

Concatenate

I had never seen the word "concatenate" until today.

I was trying to merge multiple columns into one in Excel, in an effort to squeeze a two page phone list onto one.  Microsoft help screens are terrible; I always have to go to Google for real help.

I was trying to see if I could have different text formats within a concatenated cell.  Don't try to figure this one out...I am always trying to figure out the impossible.

Today, on my Don Quixote-like quest, I hit a computer virus...a bad one.  The computer ran a scan, then took me to a place to pay.  I knew that was not right.

I put my technical smarts to work.  Geek prayer - "Please God", geek trick- turn computer off...turn computer back on.

Didn't work.

I called the help desk.  Karen, our computer tech, came over.  I told her I was Googling to figure out  how to concatenate.  She laughed and said "that just sounds wrong!".

She had to re-mirror my computer.  It took quite awhile.

Sigh...

Rockwood Child Welfare support staff...R.I.P.

Me and the hot babes of Rockwood Child Welfare.

We are now combined with East Multnomah, but we will never forget the sizzle we were...

Beaverton School District - support for the disabled

This story struck me on a few levels:

Beaverton School District's reaction to developmentally disabled student's efforts show why bureaucrats get a bad rap | OregonLive.com

I went to Holladay Center in Portland thru the third grade. Holladay was a special school for the physically disabled. My dad's job took us to southern California for a year. I went to a special school down there as well.

When we returned to Oregon in 1974, I started going to regular public school in Beaverton. My mainstreaming experience was very positive. Jodie went to Holladay center as well. She was mainstreamed in Portland. He experience was not so good...another story.

One thing I did struggle with was socialization. I had friends in my classes and all, but I missed some of the comradery I had with other kids that had struggles similar to mine. At Holladay Center, there really was no disability, we all had different abilities.

What moves me about this story is Conall's persistence to create a club for special needs kids, and Beaverton school district administrators working to help Conall reach his goal, while abiding by privacy rules.

Takes me back to spring of 1982. I was a senior about to graduate from Beaverton High. A vice principal called me out of class. The school district wanted to pay my way to go to a summer science program at the University of Iowa.

I remember thinking "Why would they do this for me? After graduation and all."

I went for the two week program. I was exposed to many scientific fields of study. I made lots of friends. I remember a guy with cerebral palsy who worked for Caterpillar, with a message that has stuck with me to this day - whatever you do, be the best at it...make it worth the company's money to accommodate your needs. I remember our weekend trip to Chicago, and a trip to the top of Sears Tower.

I am still moved that the Beaverton School district made that life changing opportunity available to me. I am moved now to see they are still willing to go outside the box to provide unique opportunities for kids in their charge today.

A cable and a ring...greater accessibility

Our friend, Shel,  from work came by tonight.  He had heard that Jodie had to park her power chair at the bottom of the ramp in the garage, then user the railing that Shel installed a few weeks ago to walk back up the ramp to close the door.

Shel attached a light cable to the top of the door, ran the cable across the ceiling, and put a ring at the end of the cable so it hangs just beyond the railing.  Now, Jodie can come down the ramp, pull the ring, and the door closes.  Very slick!

As We Pray for Peace…

I can't quite get my mind around the shooting down in Tucson.

Gabby was not on my radar before, but everything I hear about her I like. A centrist working for solutions; my kind of people.

The people who died, the judge, the 9/11 baby, the others...I am just sick.

Words from one of my favorite blogs help me.

Remembering our baptism.

Remembering why we are here.

Thinking and praying about as if life depends on it, because it does.

But what I do want to suggest is that we all need to change our own war like mantras that we put out there when we want to accomplish a goal.

This week we concentrate on our baptism, our initial moment of starting fresh as Christians and our constant reminders of those promises from that day forward. How can we renew these promises with a sense of urgency with regards to peace? How does God wish us to greet one another and deal with our differences? How can we be the refreshing waters of Baptism for others and a healing balm for the world?

This week let’s think about that and pray for those who were in harm’s way this week.

And most of all, let us pray for those who died and for peace.

As We Pray for Peace…We Need to Change « Googling God

Much love to Denise this day

Denise is having surgery today to remove cancer affected areas of her body.  We are clinging to the hope the doctors give us, and the love of God that carries us.

We thank you for the prayers you have prayed for Denise, and we ask you today to say a special prayer.

Denise and Ken, Jodie's sister and brother-in-law.  Denise is a protective older sister; Ken was like a surrogate father/friends to Jodie.

Ken walked Jodie down the aisle to me when she became my bride in September 1990.  Ken was 6'7", former University of Portland basketball star.  Tall guy with a huge heart and a kid-like love for life.   He was diagnosed with a brain tumor two weeks after our wedding.  He was told he had a year to live.  For the next four years he taught his family and friends what it meant to really love and live.

Vance was born in 1992.  Ken had a basketball in his hands by the time he was two.  To this day, Vance is most comfortable when he has a basketball, or a baseball, in his hands.

Fast forward 20 years.  Denise was found to have rectal cancer.  It is a serious cancer that requires aggressive treatment.  I cannot go into great detail because of a complicated life situation.

Cancer is never fair.  It is not fair that Denise lost a husband, and Vance a dad, to cancer.   It is not fair that Denise now has to fight cancer.   I am not going to defend God for letting this happen...or causing this to happen.  I have read the Book of Job...I know the futility of that.

God is with Denise and the family.  The pop can fundraising has been successful.  The donations continue to come into the "Denise Downey cancer fund"  at U.S. bank.   And, just last week, a family at church provided a house for Denise, Vance and Jodie's mom to stay in for awhile.

Today is a big day for Denise.  A wide gamut of emotions, but she is very strong.

Please say a special prayer for Denise and her son, Vance, today.

Thank you!

Can we send an ambulance for you sir?

"No!" I replied.

Women are stubborn, and men, well, we're men!

I have not been feeling well this week.  I've been tired and I have been feeling faint at times.  No coughing, no sneezing, no headache...just feeling yuck.  I have not fell sick enough to stay home.

This morning when I got to work, a coworker said she could hear me wheezing.  My chest felt heavy.  I texted Jodie to call our doctor to find out what to do.  Of course, they hear "heavy chest" and they want to send an ambulance.  I had my coworker, Sheri, take me to emergency.  Jodie had to come by bus because of her power chair; a coworker rode with her.

I can't  thank Sheri enough...so kind!

They did a bunch of test, a cat scan, and a chest x-ray.  Everything negative...maybe a spell of indigestion. I avoid going to the doctor because they rarely figure out my problem.

I was told not to drive until I followup with my doctor tomorrow.

Nephew Vance and our son, Eric,  picked Jodie and I up at the hospital.  Eric drove our bus from Vance's house to our home.  How many young drivers get to drive 3 qtr ton vans?  He did a wonderful job.

I am thankful I am ok, hopeful the doctor can figure out what this is.

Life...

A word from Jodie...

I can now get my chair in the house. It does pretty well. So far the only place I can't get to in the chair is the master bath. But, other than that, it will go in all of the other rooms, though some are a tight fit. I think I am going to feel better having the chair in the house. Eric was able to secure our portable ramp down on the door from the house to the garage. I am worried though about Troy walking up and down the ramp. I am hoping we can put some kind of handle by the ramp for Troy. 


Laundry was a breeze!   My arms did not go numb and my back didn't spasm. I think I am going to be able to do a lot more from the chair. It has gotten so I cannot do much from the standing position anymore.

Jodie's wheels, like new!

Jodie has had her power chair for a year now.  When it has been working properly, it has made her life much easier.  When it has stalled continuously and has to be reset over and over...and when she has not been able to reset it herself...well...you know.

The last straw was a couple weeks ago when Jodie stalled out in the rain a couple blocks from work.  I had left early to drive Eric to school for open gym baseball practice.  As I blogged a couple weeks ago we took the power chair into the shop.  They had to order parts.  We kept Jodie's chair at work, since her workspace is all set up for her power chair.  We got a manual chair in the meantime to get Jodie to and from work.

The shop called yesterday to let us know the part for her power chair had come in.  Eric and I took it in this morning, and returned to get the chair at noon.

They replaced both the left and right motors. They updated something...I don't remember what they said.

Eric drove the power chair to our van and he could not believe how smooth it drove...and twice as fast!

Jodie has not tried it yet, but I am anxious to see how she does.  I can see her booking down the sidewalk, getting to work in half the time.

I know it sounds strange, but I kind of look forward to the day when I have my own power chair to book around in...using less energy for my disability so that I have more energy for my abilities.

;)

Messing with a big kid...

I took Eric to the doctor the other.  He had what looked like an infected sliver that would not go away.

His regular doctor was not in, so he had a lady doctor attend him.  She was tall and she seemed surprised to see a kid that matched her height.

She diagnosed it as a wart.

There are two ways to get rid of wart - the slow, no pain, medicine way, and the short, painful, freezing off way.

Dry ice, wart falling of - it was a n brainer to Eric.

The doctor came back with a cup of smoking dry ice.  She had a smile on her face and a "I get to mess with a big kid!" look in her eye.

She dabbed Eric's wart with a swab of dry ice.  It was painful...I could tell.  Eric grimaced.  The doctor said that little kids scream and push her away when she does that to them.

When she was done, she threw the dry ice at the wall...it was gone in a puff of smoke.

Her smile and spirit reminded me of my Aunt Barb who was a great nurse.  Hi cousins Tiana and Travis...nice to have contact with you again.  Your mom is smiling down on us.

To whom does the power chair belong?

Yesterday, Jodie and I took her power chair in to Providence home care services to be looked at.  She stalled out a couple blocks from work yesterday, and she has been stalling out a lot lately.

I unloaded Jodie from the van, we went into the "store front".  The gal behind the counter was very nice.  She called for a tech.  He came out.  Jodie transferred to a regular (non-wheel) seat in the waiting area.

The same tech came back out awhile later.  They had the power chair up on the rack.  From viewing the log from the onboard computer chip he could see that Jodie's chair had indeed been stalling out...a lot!  The diagnosis was that the left motor on the chair needs to be replaced.

It will take five to eight business days to get the part.  They offered Jodie a loaner chair, but with her experience with the loaner earlier this year, we figured dealing with Jodie's chair is a better option.  I will take her to work and to her meetings for now...no busing it or long way ventures for Jodie for awhile.

Another tech brought Jodie's power chair out.  The gal behind the counter was on break.

The look on the tech's face was priceless! Like - "OMG! They are both disabled!  Whose chair is this?"  A deer in the headlights look - totally!

He came towards me with the power chair.  I do look like the more disabled one...no doubt.

Jodie said, "Umm, it's my chair."

"Dang!" - I could see it in the tech's eyes.

Jodie and I had a good laugh...

Bye Shadow

As I wrote before, we are a household of five dogs.

Make that four.

Shadow, one of Ma2's "Boys", was put down earlier today.

Shadow was a big, old, Lhaso Apso with attitude.  A grumpy old man whose growl frightened Vinny, a lab mix four times Shadow's size.

As a pup, Shadow had a near death experience.  A nylon stocking in his intestine was the culprit.

Shadow was a cudly dog, Ma2 says.  Jodie called him "Teddy Bear".   Shadow loved to play, he loved to tip over the small trash can we have by the computer table.  We have a plastic container--our bill box--Shadow would take whatever paper he could get out of there and eat it.  He even tried to eat the lid!

Jodie called Shadow the "Matriarch"  ("patriarch" woman!) because he carried himself in such a kingly manner around all the other dogs in the house.

My favorite memory of Shadow is how he would sit at my feet while I sit at the kitchen table.  He would get as close as he could to my feet and lay down.  I could never resist reaching down to pet the Big Guy.

Yesterday the vet said that diabetes was getting the best of Shadow.  Eleven years old.  Pain.  No guarantee that extreme measures would even help him.

Ma2 brought him home last night so we could say goodbye.  I got choked up this morning as I pet Shadow and said my goodbye.

Shadow is curled up in a much better place now.

Bye Shadow.

Skeeter, Shadow, and me

Thanks!

It's too easy to focus on the empty half of the glass.  It takes an extra muscle in the heart to see that in everything there is something to be thankful for.

Eric has been to my office, seen the cube where I spend my days...has no desire to see it again.  He calls my job "the most boring job in the world!"   Policy, data, paperwork...he really is not that far off!  Yet, I have been doing the job for over a decade.  I am proficient at it.  And...I am employed!

I am thankful for that.

Jodie...Woman #1.  She works her tail off as an office manager with little thanks or appreciation.  This has been her first year in a wheelchair full time.  As long as the wheelchair is functioning right for her, this transition has been a big blessing for her as it has reduced pain and strain on her body.  Twenty years of marriage!

I am thankful for that.

My son.  Eric is 15 and towers over me now.  Great student.  Awesome pitcher who helped lead his team to state.    He has given two sermons at church this year.  Jodie and I have always known that Eric was a gift from God to bless this world.  Every day that is more apparent.

I am thankful for that.

Family.  A job for stepdad John after a twenty month search.  Jobs and college for my nieces and nephew. Everyone rallying around  SisD with her battle with the Big C...the boys picked up a giant 80 bags of cans donation to support her yesterday.   I had an awesome visit with my sister last month, and I have been seeing my mom and have been having great visits on Saturday mornings while Papa John teaches Eric to drive.  Life - good stuff and hard stuff mixed together.

I am thankful for that.

Women #1 thru #99...you guys know who you are...keeping me sane or insane.  Lunch dates, words of wisdom...keeping me together.

I am thankful for that.

My church family - Resurrection Lutheran.  Interim Pastor Craig an Pastor Karl.  Faithfully sharing with us words we need to here.  Sisters and brothers at church with words of encouragement.  News that Pastor Mike has accepted the call to come lead us.

I am thankful for that.

Happy Thanksgiving!

This is YOUR problem

Yesterday I got an email to problem solve a medical eligibility issue for one of our kiddos.

I use to do that kind of problem solving in my previous duties; not so much now.

I went to a coworker.  I kindly told her, "This is YOUR problem to deal with", as I showed her the e-mail outlining the problem.

She shot back, not missing a beat, "That name at the top of that page is YOUR name," pointing to the e-mail.  "This is YOUR problem to deal with!"

One of us was schooled.

;)

SisD update

I had a request for a SisD update.

She had a good day today. She spent a week in the hospital.

Sores inside her because of an allergic reaction to treatment made her unable to hold food down. She was sent home yesterday continuing to have that problem. She needs another week of treatment before period of rest and then surgery.

 It's hard to share stuff when the silver lining is not apparent. The treatments seem to be working. God's strength is carrying SisD and the family through this.

 Your continued prayers are coveted and appreciated.