...You need to share it

Yesterday at work a caseworker/friend of mine came over to where I sit doing my nerdy eligibility stuff.  I told him about my new baby, wittren.com. and the desire Jodie and I have to share our story with others.  As I explained our message of overcoming barriers and never giving up, he seemed a little off guard by what I said.

I chalked it off to my uncanny ability of talking too much and annoying people.

Imagine my surprise when that same worker came over, sat on my walker, and told me "You do have a message and you need to share it."

Turns out he had a sister who had very severe cerebral palsy, who was hospitalized at age three and passed away at age six.  After all these years he still had some raw emotion over this.

I hurt for his pain.  I was thankful he shared this part of his life with me.

It also made me thankful for the life Jodie and I have.  The smallest change of circumstances could have made the life we have together impossible.  Without the love and support of family and friends, we would not be where we are.

We all have abilities; we all have disabilities.  It's about focusing on what we can do rather than what we can't.

Yes, we have a message to share.

Observations of the day

A resolution I have for this year is to blog more.  I feel I dropped the ball last year by not blogging much.

It's easy to blog when life is moving fast and a lot is happening.  When life is mundane, not much happening, blogging is difficult.  There did not seem to be much that  happened last year, so I did not blog much.

This is a bad excuse for me.  As a writer, I am a life observer who should be able to take the most boring of days and turn it into fine art with the right words.

Today was Jodie's first day back to work after two and a half weeks off.  I went back to work today after five days off.  This morning, Jodie and I were getting ready to leave for work, and Eric was getting ready to leave for school.  Before we left, Eric gave Jodie a hug and then gave me a hug.  With a 6''5" teen, that does not happen everyday.  A wave of joy came over me considering what a great kid we have.

The news of the day is that Romney won the Iowa caucus by eight votes.  It makes me laugh  to hear the big deal people are making over that.  I like to follow politics. I am a moderate...a moderate what I am less and less sure.   I really am  not sure which party contains the majority of my ideas anymore.  Both sides seem more interested in self promotion rather than getting the right things done for the people.

Jodie sent me a message toward the end of the workday that she wanted to go to the midweek church service tonight.  Eric was going because the youth we having a white elephant exchange with the youth afterward  I was surprised  to see the Christmas decor still up in the sanctuary.  Pastor reminded us that Epiphany is Friday, and intern Ray shared more with us about what Christmas means to us.   Jodie and I are hoping to make the midweek service a habit.

I will try to be more observant this year, and will put more effort in making this blog more interesting for you.

Making the world a better place

Jodie is a speaker and I am the writer.  Jodie and I have known that from the beginning.  You can tell that from the video we just posted here on this blog.

Video blogging is kind of weird.  Staring into my netbook's eye and talking.  No contact with the audience, no questions to answer - so one dimensional.

When I was in junior high, I was asked to speak to my sister's first grade class.  I can't begin to tell you how empowering that was to me.  These little guys, who perhaps would of laughed at me had they first seen me outside the classroom, we listening to my story and beginning to understand me.

Four or five years later I saw a young boy as I was riding my big yellow trike through the elementary school grounds.  He said, "Hi, remember me?  You spoke to my first grade class."  I was use to kids teasing me.  I would do what I could to avoid  kids because of this.

This little guy empowered me by showing me respect.  I was even more struck by the thought that my speaking to a first grade class years ago produced a boy who probably not be so quick to judge people because of the way they looked.  Seeds of what I said helped make this world a better place.

Making the world a better place - that is why Jodie and I want to do public speaking.

Please look at our new website, wittren.com,  How many people do you know who have their last name as a domain name?  Kind of geeky I would say...

Read our story.  Maybe you are in a group at church, at work, or in an organization who could benefit from our message.  Maybe your child has a class that needs to hear our message - that people who are different are okay.

Making this world a better place...

Jodie and Troy video - public speaking

Holladay Center

Video journey day 2

Hi...I'm Troy...and I'm Jodie!

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 house...now that would be a classic!

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!

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.

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.

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!

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 kids...so 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 writer...one 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 wittren.com. We are willing to answer any question and we want to do whatever we can to promote disability awareness.

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.

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.

OR-Kids

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 that...man, 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.


 

Labor Day Weekend 2011

Jodie, Eric & Troy at Brad & Lori's

Raising money for a good cause

I am not supposed to mention the cause out of respect for privacy...so 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:

http://www.yardsalesearch.com/yss-garage-sale.jsp?id=20989620

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.

:)

Disposability...so 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 it...it 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!