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

Wednesday, December 28, 2011

Holladay Center

Tuesday, December 13, 2011

The bird on my mom's window sill is real...

Mom called me today and told me this robin had gotten in the house:

a picture of mom trying to get the bird out of the that would be a classic!

Saturday, December 03, 2011

Two Coke trucks...the real thing?

I drove down to Safeway this morning to get a few things for breakfast.  I parked on the side of the store because I wanted to use our lift to get my scooter out.  Our lift is in back.  I like to park in low traffic areas so I am not blocking cars while I unload my scooter.

I thought I was in a low traffic area today, but a Coke semi came through as I was getting my scooter out and I had to fold the lift back up so the truck could get through.

What was really strange was that when I came out of the store and was loading my scooter, another Coke semi came through and I had to hurry up and fold the lift so he could get through.

Made me chuckle..a run in with two Coke trucks during one shopping excursion...and I am a Pepsi guy!

Thursday, October 27, 2011

Laying back with shades on...

Like an old friend, I stop in to see her every six months...and we chat.

Today she sat me down in the chair, leaned me back. She offered me a pair of shades to wear; I accepted.

She saw Eric last week. She was happy to hear how well he is doing in school and in sports, how tall he is and that he is driving. I tell her about the new computer system at work and how it is making Jodie and I go nuts.

She shared with me that she had just returned from a trip from LA. She had been there for two weeks with her daughter, who had to have a double mastectomy and was fighting an aggressive form of cancer.

I did not really know what to say. I really could sense her pain. I started to pray for her daughter. I babbled on so as to not let the conversation drop. I then told her "One day at a time." It is really the best we can ever do, but sometimes we fool ourselves into thinking that we have a semblance of control over life.

As she cleaned my teeth, yes, the dear lady is my hygienist, I noticed my lower jaw was doing the cerebral palsy shake thing. I wondered how often it does that without me knowing it. I realized that I am likely this hygienist's toughest patient that she sees in a year. My inward complaining "Man! This always takes so long!" turned to "Man! She she really treats me with patience and grace."

I got back to work. I had several IM's going in no time...all work related, of course, I had a "dear John" email for a job rotation I was really hoping for. I told Justin I didn't want to open it...but I did.

Made me realize that things happen for a reason, or don't happen for a reason.

We are just called to be there in the moment...even if it is laying back with shades on.

Saturday, October 15, 2011

Off the bus!

A local uproar is being made about a local lady who was kicked of the bus for failing to quiet her crying baby.  The driver has been disciplined, though Tri-Met cannot disclose what the discipline was.  It is probably a letter in the driver''s personnel file that stands to be removed upon appeal if the driver cares to do so.

Many passengers got off the bus with the lady and the baby - a sign of solidarity against the bus driver's unreasonable demands.  I think it is wonderful the support of the other passengers, all the media coverage and the public outcry.

At the same time, I am bothered at all the attention this story is getting.

Twenty one years ago...Jodie and I were newlyweds.  We were living in those old brick apartments behind Carr Chevrolet in Beaverton.   I was working for the child welfare office in Hillsboro; Jodie was working for for the Center for Hearing and Speech up on the hill..  I would race home from work in my '70 Nova (they can go fast...I've been told)  and I would wait for Jodie to come home on the bus.

Jodie would take the bus from up on the hill, to downtown Portland, and transfer to the Beaverton bus.

One day I was home waiting for Jodie.  The phone rang.  Jodie was calling from downtown on a pay phone. She was crying.  "The driver won't let me on his bus.  You need to come and get me."  I hopped in the Nova and drove downtown.  Jodie was waiting on the corner, shaking with anger and tears.

Jodie was walking with crutches at the time.  To get on the bus, she would hand the driver one of her crutches so she had a free hand for the railing.  Most drivers easily complied with this, but this one driver refused.

We called  Tri-Met to complain.  They wanted to witness the driver not letting Jodie on the bus.  They stationed a supervisor where the drive could not see him.  The driver refused to let Jodie on the bus.  They tried this again, and the driver refused again.  The third time, with a supervisor visible, the drive still would not allow Jodie on the bus...he was not going to be told what to do.  The fourth time, with a supervisor stationed where Jodie got on the bus and another stationed where Jodie got off the bus, the driver complied, shutting off the bus and making as big of show as he could.

Jodie and I went to a meeting with a special disabled committee with Tri-Met.  Jodie shared what happened...and they did not really care.  We were laughed at.

I was not blogging at the time.  Facebook and Twitter was not around.  I may have written a letter to the paper.  There was not a way to get the story out...and all the avenues we took to get the story out were met with apathy.  The only real comfort we had were other drivers who knew who this driver was did not have good things to say about him.  He was a bad egg.

The story about the lady with a  crying baby getting kicked off the bus is getting the viral social media treatment.  She is getting the attention that Jodie never got.   In the end, however, the driver gets a slap on the hand.

Similar stories, much different public attention.

In the end, the outcome is the same.  The status quo is met.

Saturday, October 08, 2011

Another milestone - a newly licensed driver in the family

For 16 years I have been driving the little guy to daycare at grandma's, or to school. A year ago Eric got his driving permit, so we switched seats in front.

Yesterday morning he took his driving test here in Gresham....8 o'clock...first thing in the morning. His driving tester was named Mary. When he got back, all the other workers in the DMV wanted to know how Eric did. They were surprised..."You got a 95% from Mary?" They said that Mary was the toughest tester in the office.

Eric drove us to McD's for some breakfast, then he dropped me off at work and drove our Sprinter to a friend's house. There can't be too many 16 year-old's out there who drive Sprinters. We are still trying to figure out the vehicle situation. He wants a truck...something about boys and trucks.

Last night I had Eric pick Jodie up at work, then come get me at my office, then we drove and picked up his friend, yes, the girl type, and I drove them to the bowling alley.

Today Eric drove us to the Beaverton Olive Garden for a birthday celebration with my side of the family. On the way home, Jodie wanted to stop to buy Eric some new duds for the homecoming banquet next Saturday. It was nice to be able to tell Eric to drop me off at home and just have him and Jodie go.

Our "Little Guy" is now 6'4". I still can't believe it!

Saturday, October 01, 2011

Telling our story

At back to school night a couple weeks ago, Jodie told Eric's health teacher that she and I would be willing to come and speak to her class about our experiences as people with cerebral palsy, Ann, Eric's health teacher (also basketball coach when he was very young), said that she was doing a unit on brain injury and that a presentation from us would fit in well.

Yesterday, Jodie and I took the day off work to go and speak to Ann's three health classes, including Eric's.

My prior experience doing this kind of thing was when I was in junior high I was asked to speak to my sister's first grade class. I was such a hit that the teacher asked me back for a couple years. Young innocent and honest with their questions...I was able to tell the kids how much like them that I was, how I became disabled, and that I could do most of the things they could do, only differently.

Jodie use to travel for a non-profit group called "Breakthrough" speaking to church groups throughout the U.S. to promote disability awareness. Jodie has a lot of speaking experience and has thought for a long time that she and I could travel and share our story with groups. She is a speaker and I am a of these days it will come together.

Ann wanted us to talk about our cerebral palsy...what it is and what caused it. We know the cause - Jodie was under 2 pounds at birth, and I had the umbilical cord wrapped around my neck, choking oxygen to my brain. It was funny, Jodie and I don't know much about the technical aspects of cerebral palsy, so we were surfing the internet trying to learn more about cerebral palsy.

Jodie talked about her birth, how the doctor was not sure how she would survive her first night. and her early life. I talked about how my grandma, a nurse, could tell that I was not holding my head up right when I was 8 months old, and that shortly after that I was diagnosed as having cerebral palsy.

Jodie shared about the early school days we spent at Holladay Center in Portland, the intense therapy we went through, and the special kind of baseball we use to play.

It was hard to tell what the kids were most interested in hearing about. One boy wanted to know how I could drive.

After the first class, Ann encouraged us to share more about God in our life. Jodie shared about going to her room as a child and praying for God to heal her. Years later she told her pastor. The pastor explained to Jodie the many ways that God had healed her and brought her through life.

I shared about how people have prayed with me for healing, and how I have felt bad for them when I have not been healed by their faith. I shared about how Paul prayed for God to remove his thorn from his flesh, thought to be weak eyesight, but God chose not to. "...for my power is made perfect in weakness."

Anyway, Jodie and I are open to sharing our stories to other groups, kids or adults. You can find more information about us at We are willing to answer any question and we want to do whatever we can to promote disability awareness.

Monday, September 26, 2011

The barrier of intellectual ignorance

As I read Glenda's blog post about Cayleigh, I found myself getting angry.  Cayleigh is a four-year-old cp'er in Texas.  The Texas Department of Assistive and Rehabilitative Services would not provide a communicative device for Cayleigh until she started school.

Cayleigh is non-verbal.  Would you send your child to school before they were able to communicate?

Over the summer, Cayleigh's mom and dad bought her an ipad with the Prolouquo2go app,   Glenda has blogged extensively about what a premiere communicative device this is for the disabled at a much lower price than what the traditional devices cost.  Cayleigh's mom worked with her over the summer to master the device, but Cayleigh's teacher was not impressed:

"She started talking about a study that happened in the late 80's early 90's when facilitators were starting to be used. A facilitator is someone who supports the non-verbal person's elbow so that they can use some sort of communication system. This isn't new news to me, but I sat listening. Apparently the study found that when the non-verbal person was the only one who could see the object in question there were all kinds of errors, but when the facilitator was involved and was aware of the question the answers were often correct. Basically, subconsciously the facilitators were giving the non-verbal person some sort of signal. She then proceeded to tell me that because of those findings that she could not test Caleigh using her iPad the way that she currently uses it supported in our lap. She feels that Caleigh needs to be able to communicate independently for her to properly do her assessments. The sooner we can get another device the better."  -- Cayleigh's Corner
There is a intellectual arrogance when it comes to educating and training people with disabilities.  Jodie and I both spent our early school years at Holladay Center in Portland, a school for children with disabilities.  The school was a boot camp of sorts for us.  Intense therapy - physical, occupational, speech - as well as working with other kids with disabilities, gave us a base of skills and confidence to jump into the real world.

We tried to explain this one time to a cousin of mine who had earned her masters degree in special education.  She was pretty much appalled that Jodie and I would advocate any kind of segregation.  Our point was not that the disabled should be segregated from the non-disabled, but rather that there are times when the disabled can be together, pool their strengths and be a support for each other.

Through the years Jodie and I have heard stories from mother's with disabled children who get some services through the public school system, but not nearly enough to help them achieve the kind of independence that Jodie and I have attained.

I am not saying that Cayleigh's teachers mean to harm her by taking away the communication device that she and her family had mastered, or that all disabled students should always be together.  I am not saying that the experts on disability are wrong.

The disabled and the families that deal with disabilities have experiential expertise that should be at least on par with the book learned expertise.

We have enough barriers to overcome; intellectual ignorance should not be one of them.

Friday, September 23, 2011

Amazing garage sale

If you are out and about in Portland  tomorrow, stop in and check out:

The Amazing Garage Sale

Low prices...the family appreciates your support.

Monday, September 05, 2011


Last week, the state agency I work for,  began using a brand new, very comprehensive, SACWIS system. The information a child welfare agency must track is huge.  OR-Kids has been years in planning and development, and it replaces our FACIS system that has been around since 1994.  Yes, I was around for, I am getting old.

The new system requires much more data input.  It is labor intensive up front, yes, but as an eligibility specialist who mines data to gather enough  information, it is a bit of a dream.

Last week was hard for me though.  I wanted to get through at least one determination.  I kept running into bugs.  Flustered a bit, because I like forward progress, but not really surprised.  Soon me or the system will get whatever me or the system has to get and forward progress will be made.

Because my job is a unique on done by a small  group of us across the state, I started a wiki page for us all to report issues we are having with OR-Kids and posting solutions as they come through.  My hope is that we can use each other's issues and successes to speed our forward progress as a whole.

I am anxious to see how this experiment works.


Saturday, August 27, 2011

Raising money for a good cause

I am not supposed to mention the cause out of respect for I won't.

Open hearts, open wallets, great stuff at a huge yard sale.

If you are anywhere on the eastside of Portland today, please check it out:

Wednesday, August 24, 2011

Bye Diana...

Tomorrow we will gather at Willamette National Cemetery to say goodbye to a family friend.

Fred and Diana were friends of my Mom and John. They came over a lot with their daughter, Danni, when I was in high school. We were at her mom's beach cabin when Mt. St. Helens spewed ash everywhere.

Fred was a vet from the Vietnam war. Not a bragger...a kid doing what he was told to do he would say.

Diana was the girlfriend waiting at home.

Life was never that easy for them. Jobs came and went, health issues came. They never gave up and their zest for life never died. They went on trips and they never quit figuring out ways to have fun.

Fred died a few years ago...I think it was cancer.

This past year Diana put up a helluva fight against lung cancer. The cancer spread. I saw her last fall while she was staying with Mom and John. Diana was not shy about showing Eric and I how her head had been stapled together after doctors had gone in to remove what they could of the spreading cancer.

Diana will rest with her love, Fred. tomorrow.

I asked Danni for a favorite song of Diana's. Of all the songs, this is the one that popped into her head first:

Goodbye Diana. We mourn, but thought of you will always put smiles on our faces.


Saturday, August 13, 2011 ungreen!

We bought our last microwave nearly two years ago. A GE "Spacesaver"...considered a mid-sized microwave I discovered from my research today.

A nice microwave with lots of special buttons, including Jodie's favorite "popcorn" button. We really loved did everything we needed a microwave to do...until a couple days ago. It would turn on, the fan and light and carousel ran...but no heat!

I did some Googling. It could be a fuse or a diode, but more likely it was a control something another. $92 for the part and whatever for labor...for a microwave that cost $119.

I was perplexed. A good microwave that served us well for nearly two years. It would most likely cost more to fix than replace. It seems so ungreen to replace rather than repair, but we did not want to deal with the inconvenience of taking it to a repair shop and risk paying more to get fixed.

We went to Fred Meyer. Two Sharp Carousel microwaves caught our eye. One was $99 and had a single special sensor "popcorn" button. Jodie would have been happy with that one. The other was $30 more with several sensor buttons. One was mid-sized and one was large. We went for the large one.

Now we have a broken mid-sized microwave to dump. Helping the economy, while thumbing our nose to planet Earth.

So ungreen!

Saturday, July 30, 2011

A beautiful Saturday...

Jodie and I with a free Saturday. Eric is finishing up his mission trip to Las Vegas with the high schoolers from church.

Jodie wanted to go to the fair. The Washington County Fair has free admission, that is always a draw to us. Funny though, I think those six dollar corndogs probably covered the admission price. They were really good though - footlong, deep fried...not the kind the Obama girls would ever be allowed to eat.

Part of the fun of going to the fair for me is parking in the disabled parking lot and seeing adapted vehicles of all kinds. A guy who parked near to us had a small truck with a crane in back. He used it to hoist out a powerchair for his wife.

We usually take Eric to the state fair in Salem. We go pretty much every year. Jodie has her powerchair, I have my scooter, and Eric gets tired...;) He use to ride on my lap when he was tired, but now he is over six ft. Today, Jodie and I were free to go and not have to wait for our able bodied son.

Jodie and I watched a couple rides. This one ride raised the riders a few stories off the ground...and then dropped time and the ride was done. The ride next to it was much longer and seemed like a much better ride for the buck. It was a roller coaster in a circle. The cars kept going higher and higher on each side until it went clear around the circle with the riders upside down.

We enjoyed a dog show. We kept hearing Clint Black tunes (no vocals) coming from the amphitheater area. We would have loved to have seen his show, but we did not want to stay that late.

We did take in a western show in one of the side tents - the Marty Davis show, The Legend of the Pioneers. He was very good! He did a great job with "Ghost Riders in the Sky." It was pretty hot outside. This guy moved a table for us so that Jodie and I could get in, then he offered us water...really nice!

We went through a couple barns to see the animals. Twice we saw cows relieving themselves. I guessed I had never witnessed it before, but with their rear ends pointed toward us, it was, well, gross!

Before we left, Jodie wanted to get some kettle corn. We circled the fairgrounds looking for it. Jodie wanted to give up looking, but I knew we would find it somewhere...and we did.

On the way home we stopped at Buffalo Wings for dinner, then we watched a Cary Grant movie when we got home.

It was a beautiful Saturday!

Wednesday, July 20, 2011

Pass around the blessing...

I was in my final years of college.  Annette, a dear friend of mine who helped me find Jesus and who took a bus up from Ashland just to go to my prom with me - she had come down with Hodgkin Disease, a form of cancer that had taken her dad's life.

I took a train up to Tacoma to see her and cheer her up.  I met a guy on the train named Wes.  We hit it off and we talked the whole trip.  He was going to Oregon State University also, and he was on his way to see a friend also.  Wes was from Hawaii.  When we got back to OSU, he invited me to a luau.  It was a beautiful production put on by the Hawaiian club.

I'll never forget the night that Wes came by with a buddy with his buddy's 4 by 4 classic black Cadillac.  It was four feet off the ground!  Needless to say, I was hoisted in!

Anyway, me dear friend Wes sent me a Facebook message with the video below.  Wes lives over in Hawaii.  He is a triathlete like the one guy in the video.   I am like the other guy with cerebral palsy...not quite as bad.

Wes always says that I inspire him.  That always makes me feel a tiny bit squeamish.  My foibles are many...just ask my coworkers who have all abandoned me, leaving my side of the building empty!

Wes inspires me.  He runs marathons and triathlons, but he finds inspiration in a guy like me for whom getting out of bed in the morning and getting to work is like running a marathon.

Watch the video.  The song it plays, "I can only imagine" is one of my chokes me up a bit. Each man in the video is a inspiration. Together though, there is power...a miracle is born...there is blessing.

Friday, July 01, 2011

A very lovely first of July scene

On our way home from the baseball tourney today, we wanted to stop by the river and see the scenery. We tried to do this in Hood River, but we kept going the wrong way and could not find a place.

As we headed home, we stopped off at Cascade Locks. We found a boat ramp with people, all shapes, sizes, and colors - they were lining the banks fishing.

A very lovely first of July scene:


Our son has a baseball tournament in Hood River this weekend.  Today was day one.

The games are being played at Hood River Valley High School.  Other than having to maneuver Jodie's powerchair and my scooter (with a weak battery) over a bunch of grass to get to the jv field, accessibility was not bad.

After the game, we stopped at Shari's Restaurant to eat and, well, Jodie and I don't do outhouses.

Jodie went into the restroom.  The handicapped stall was not large enough to accommodate her powerchair.  She parked it outside the stall and went in to do her business.

As Jodie was making her way back to her powerchair, a lady came into the restroom and was mad because Jodie's power chair was blocking the other stall.

"Jeez!" the woman said, very upset.

Jodie hurried as best she could.  She was not able to wash her hands an that really bothered her.  We are going to get hand sanitizer for her to pack on her wheelchair.

Disability is inconvenience...there is no question about that.  We work hard to make sure that it inconveniences us only and not other people.  Sometimes we cannot pull that off.

If we were to stay home and go nowhere, we probably could pull it off.  God has blessed us with a rich life filled with many gifts that does not give us that option.

Next time we are in your way, blame God.

Thursday, June 30, 2011

Curb cut, Mr. Mayor

Eric's baseball team had a game at Overlook Park in north Portland last night.  We played David Douglas.  Not sure why two eastside teams had a game way over there...

The parking lot was taken over by an outdoor festival.   We drove down Overlook on the north (?) side of the park.  We parked at the corner of Melrose and Overlook.  We were lucky to get a corner spot so we had room to let are lift down.

The baseball field was close, but there was no curb cut on the corner.  I thought about the pothole signs around the city that the Mayor had posted for people to alert the city of potholes that need fixing.  A public park should have curb cuts at every corner.  There should be a phone number for that!

Jodie and I motored wheelchair and scooter down Overlook, over the giant speed bump, until we found a driveway.  We drove on the sidewalk back to the field.  The sidewalk was old cement tiles crumple by huge tree roots.  One had a 4 inch drop!    I'm not going to complain...I realize this world is not made for us.

We sat on a very high, steep hill over looking the field.  Coach saw is and asked if we were going to  come down the hill...with a grin on his face.

Turned out the son of dear friends of our were on the other team.  We had a wonderful visit with Barby and Larry, and her parents, Jim and Judy.

Big unit pitched an  inning.  One hit...then 3 outs...bang, bang, bang!

Thursday, June 23, 2011

Onward, Elizabeth Hovde, onward

I am a fan of Elizabeth Hovde.  She is a conservative columnist for The Oregonian.  I am not exactly a conservative, for anyone who knows me.  I don't believe all truth lies in one camp.  I like to read all sides.

Elizabeth is a conservative with a heart and a brain.

I sent her an email last May when she wrote about how special that foster parents are.  I thanked her for making such an important point, and for the way her writing has of  making me feel and think.

My heart was broken when I heard of her skiing accident last January 11 that left her with a traumatic brain injury.  I have been praying for her since I heard about it.

Oregon Public Broadcasting interviewed her the other day. I missed it when it was on the radio, but I found it online:

I applaud her courage for doing a radio interview.  Life is different for her now.  Two young kids and a husband.  Life is different for all of them.  Something like this could happen to any of us at any time.

Elizabeth wrote back to me last May.  I think the words of encouragement she wrote me is a wonderful prayer of hope back to her:

"Keep up the writing, the humor, the love of life.  Onward,  Elizabeth"

Onward, Elizabeth, onward.

Saturday, June 18, 2011

Barriers will not keep us from Eric's game

Eric's single A legion baseball team has been playing tournament this weekend.

Gilmore Field in Salem. Beautiful ball fields with berms around them.

Friday's game was at the varsity field. Jodie and I motored all around to find a way up the berm. It is just too steep. We did find a spot where we could get on top of the berm, but I feared that a homerun ball from the one field could nail us, so we went down into this little hole behind the benches. We almost feel like buying batters hard hats ourselves to protect our heads from foul balls.

After the game we gingerly motored our way up the berm, across, and back down. The feeling of driving a scooter and a power chair on a steep slope - it is scary. You feel like you are going to tip. I rolled my scooter once and it was not fun. Jodie in her power chair...the prospect of her tipping frightens us to death.

Today's first game was at the jv field, which sits down below a berm. Jodie and I stayed at the end of the right field line. I used my walker today to increase my agility to maneuver the berm, but it greatly decreased my ability to go very far. I told Jodie she could probably get over the berm at one place, but she did not want to try...and she wanted to stay with me.

The second game today was at the varsity field. I just muscled my way up the berm, across the top, and over to the bench. Jodie followed. She kind of freaked when she stopped. We were on top of a narrow, steep berm. Bob, the dad of one of Eric's school friends...and a friend of ours, was with us. He walked with Jodie, helping her turn around and go back to a low spot where Jodie could get down. People had a tent up and were watching the other game in the spot where Jodie had gotten up the berm. The people were willing to move, but Bob was able to guide Jodie down the berm.

Places we need to go to support our son in his sports are often not accessible. It does not stop us. We wish places were more accessible, but we realize that many places just aren't. I am thankful for the kindness of friends, like Bob, and strangers, who help us around the barriers we come across.

I just wish that the designers of kids sports venues would be aware there might be a kid playing with a parent in a power chair, a scooter, or a walker.

Saturday, May 28, 2011

Ben Comen - CP'er cross country runner

You fall get back up. Pretty much summarizes cerebral palsy.

The story of a true champion.

Thanks Kathryn for sharing this with me.

Friday, May 20, 2011

I am ready for the Rapture!

We saw the Weinermobile today at Wood Village Fred Meyer. I have now seen it all.

I am ready to be raptured!


Friday, May 13, 2011

Seth Reder, new artist with amazing voice

My work cube neighbor's nephew is out with his first demo. Great acoustics and vocals!

Please give a listen:

Sunday, May 08, 2011

I am an "Important Person!"

We husbands say stupid things all the time. It is part of our job description.

When Woman #1 is mad, you say nothing. Husbands know that. Total no-brainer.

Yesterday I slipped.

Eric's varsity baseball team had a game in Tualatin at Horizon Christian. We thought our favorite third string catcher might get to catch, but instead a junior was pulled in from the outfield for the catching duties.

Jodie likes to position her powerchair as close as she can to home plate.

Horizon has a beautiful baseball field. When we first got there we saw the team folding up the tarp that covered the whole field. Dugouts were nicely built with cinder block. There was a low cable fence separating the field from the parking lot. From the backstop to the outfield fence, it was a beautiful field.

Behind the backstop, the ground was rock and hilly. There was a eight inch curb. The only curb cut was blocked by shrubs at the top. There was no way for Jodie to get up to the spectator area.

Jodie was upset. She could not believe the lack of accessibility to get up to the field.

We parked in the lot down by third base. We could see everything from there except the most important part of the field - home plate.

I told Jodie, "This is terrible that there is no accessible way to the field. If there was an important person on the board or at the school that needed access, there would be access."

Jodie shot back "I am an important person!"

Ouch! I said the wrong thing!

A big fault of mine is that I can see many sides of things. Accessibility is spendy, and how many disabled come to watch baseball games?

Jodie totally did not share my sentiment.

I moved our van over behind the backstop, as close as we could get, which was not very close. We could see parts of the batter, depending on which way the crowd was moving.

Jodie was not happy not being able to see much of the game, but people watching is always priceless.

There was a couple dogs at the field. A lady brought her dog behind the crowd. The dog did his duty #2. The lady covered it with the bark that was covering the ground. She used her toe to lightly cover it. The lady looked up and saw Jodie and I watching her. She shrugged and giggled with a 'oops' look on her face.

We then watched a multitude of people walk over that spot and tried to guess who got the surprise on their shoe.

We lost the game to Horizon 5 to 3. Portland Christian's first loss of the season.

I don't think it's possible for a non-disabled person to understand a barrier of an eight inch curb. Until you are in a wheelchair and you can't get somewhere you really want to get, you won't understand.

Us "important people" understand.

Tuesday, May 03, 2011

Garmin...Google Map...where am I going?

Eric is on the varsity and the junior varsity baseball teams for his school, Portland Christian. He counts the hits, is the warm up catcher, and backs up first for the varsity team. He does not see much playing time for varsity, but Jodie and I don't miss a game.

Yesterday, there was a game at Western Mennonite High School. I put the address into our Garmin. It directed us to go over the Wheatland Ferry. I didn't want to go over a ferry with our big Sprinter van. I went to Google and got a map that directed us to take Highway 99, to 18, to 221. It seemed simpler. If I missed a turn, we'd wind up at the casino...not so bad.

I was not in the right lane for the Tualatin exit off I-5. I could not get over. I've gone that way many idea what I was thinking. I took the next exit and made my way back to the Tualatin/Sherwood Road.

We made it down Highway 99. The Garmin kept telling us to turn everywhere. I left it on so that when we got close to the school, it would let us know.

We got caught in that bottleneck area on Highway 99...took us forever!

The school is on Highway 221, northwest of Salem, between Lincoln and Hopeveil, two small towns I did not know existed. Farmland, fresh air, a very beautiful setting for a school.

We made our way to the parking area. It was a grave lot, except for a couple cement slabs for disabled parking. I parked in one of the slabs. Jodie moved her chair onto the lift. I let her down. The gravel was a slight down hill slop. The lip at the end of the ramp would not go down. I had Jodie get back into the van and I drove to the other disabled spot. Save for the nasty mud hole I had to slog through to open the back doors of the van, I was able to unload Jodie in her powerchair and my scooter without trouble.

People were looking on with curiosity as we unloaded. I got the feeling the the disabled parking spots don't get used much at that school, and they probably don't see many lift vans there.

The boys won. Eric counted the hits. Jodie was not sure about letting Eric drive us home, but I knew he could do it.

We followed the team bus into Salem. We grabbed dinner at a Dairy Queen drive-thru, parked to eat, watched a guy bum some change from a gal sitting in her car a few spaces from us. We watched him go into the market across from us, come out with a brown paper bag, and disappear behind the Tru Value store.

Eric drove us home and did a fine job.

Now, I need to find LaSalle high tomorrow, Sherwood high on Friday, and Horizon Christian on Saturday. season...

Saturday, April 30, 2011

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.

Blogging Against Disablism Day, May 1st 2011

Friday, April 29, 2011

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

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

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.

Thursday, April 28, 2011

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.

Thursday, April 21, 2011

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.

Saturday, March 26, 2011

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!

Friday, March 25, 2011


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.


Tuesday, February 08, 2011

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...

Tuesday, February 01, 2011

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 |

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.

Wednesday, January 26, 2011

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!

Sunday, January 09, 2011

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

Thursday, January 06, 2011

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!

Wednesday, January 05, 2011

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 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.


Monday, January 03, 2011

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.