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

Wednesday, September 30, 2009

Cherryhilll Drive

The founder of Sunshine Pantry got her start on Cherryhill Drive. My family lived there when I was a kid. Neat to see that such a great organization got it's start there:

Sharon Straus, Beaverton's ray of sunshine, is honored by governor | Washington County News - – "Straus started the pantry 28 years ago in her garage on Southwest Cherryhill Drive. But its success in drawing needy families led to problems with parking and garbage. At least one neighbor complained"

Thank you Oil Can Henry's!

This is not a paid commercial, just a thank you for good service.

Our rig, Jet White, is a diesel Sprinter. When we first got it a couple years ago, we took it to our local Oil Can Henry's for an oil change. They did not stock the oil filter needed for our rig, but the manager told us if we went and bought one they would do it for us.

We were getting ready for our California trip, so we really wanted to get the oil change done. I had to go to a few auto parts stores to find the filter...even then it had to be ordered. Oil Can Henry's did the oil change. We were thankful they did the oil change for us, but after that we found it easier to just go to the dealership.

Lately we have had to have our headlights changed...each one, a couple weeks apart. The manager at Oil Can Henry's asked me where I was going for my oil changes and how much I was paying. He offered to order the parts and do it for less.

Last night Eric and I stopped and they did the oil change for us.

Way more convenient.

Thank you Oil Can Henry's.

Monday, September 28, 2009

Sometimes I think the world would be a better place if...

...every non-disabled person experienced time in a wheelchair:

Disability changes the view | The Journal Gazette, Fort Wayne, Ind.: "Getting this wheelchair through that festival was like being shoved around while sitting on top of a barbecue grill.

After about 20 minutes, I started to wonder whether caramel apples were worth navigating through pieces of gravel the size of a Ford Festiva. (They are.) Or whether the opportunity to sit and watch a group of people pop Beano before tucking into bowls of ham and bean soup was worth the approximately 15 minutes it took me to get to the top of the hill where they were sitting. (It wasn’t.)

Here’s the surprising part: Despite the wheelchair challenges I encountered – including hitting a pothole and getting tipped out of the chair like a bag of manure – this was one of the most enjoyable times I’ve had at the festival."

Sunday, September 27, 2009

Time for "the chair"?

When Jodie and I were kids, therapists, teachers, doctors, our families...everyone, pushed us to use every ability we had to overcome our disability. Jodie had many surgeries as a child so that she physically walk with crutches. Doctors told her to keep walking as long as she could. Use the ability or lose it...push, push.

Her doctor said that the tightness caused by her type of cerebral palsy would creep up from her legs to her upper extremities as she got older. Jodie has been feeling it start to happen, but has been trying to deny it. Now, the doctor and the therapist are saying it is happening. It is time for Jodie to look at using a wheelchair.

Jodie and I have been using scooters for about eight years now, mostly for shopping and when we are out and about. Also, Jodie has been using her scooter to get to work when the weather is nice. We are a mile from her office. It is a nice scooter ride for here when the weather is nice. It also allows her the freedom to leave work when she wants rather than waiting for me to get there. When she gets to work, she parks it in the basement and she walks with her crutches to her office.

As an office manager, Jodie is on her feet a fair amount of the day. Well, that is about to change.

The doctor is sending Jodie a prescription for a power chair. The power chair will allow her greater mobility in tighter spots, such as her office.

We don't know yet if Jodie will need to use the power chair at home. Out home is a one level ranch...beyond that, accessibility is questionable. The hallway is narrow, as are the doorways. Neither one of us were thinking about scooters or power chairs when we moved in here in 1998. Our thought has been to look for a more accessible place when our son grown and out. Maybe a condo...we're not sure.

Readers of this post who aren't disabled might be tempted to feel sorry for us. Readers who have been in a chair for years might say "Welcome to our world!"

Jodie is worried that surrendering to a power chair is an act of "giving up."

I look at my own ever increasing instability on my feet and I realize that I could some day be facing this transition as well.

I see it as facing our mortality. Not mortality as in death, but rather in the weakness of our human shell. A bummer? Perhaps. A chance for growth of spirit? I think so.

The glass half full.

Disability is not for wimps!

Saturday, September 26, 2009

Moo & mouse

One of my favorite blog reads is following the adventures of Moo from Down Under as written by his dear Mum.

In this post she is trying to find a mouse that Moo can use for the computer. She tries the end, Moo figures out what works for himself.

I can relate because of my battle with the mouse. I can use a mouse, once I get the settings right. I bought a track ball. It really did not work for my.

The mouse I use for my netbook has a short in it, so I am back to using the trackpad. I am doing pretty good with it.

This is a great post:

Mice @ Terrible Palsy

Thursday, September 24, 2009

"Mad Men" and disability

Jodie and I started watching the award winning AMC drama "Mad Men".

The current season does not seem as good as last, but we continue to watch to see what happens.

If you are unfamiliar with the show, it is set in a Madison Avenue ad agency in the early 60's. Part of the genius of the show is the extent they go to to show the history and attitudes of the period...the ism's...racism, sexism.

Well, this week they got to disablism.

It was pretty corny how they set this one up. A drunk secretary driving a John Deer tractor through the office. She ran over a guys foot.

At the end of the show, the execs are mulling over the fate of a guy with one foot.
"The man is missing a foot. How's he going to work? He can't walk." And, the kicker, "The doctor said he will never golf again."

It made me laugh to think how crazy it was back then that the thought of disability was worse than death. I think back in the 60's most people felt that way. I think a lot of people still feel that way to some degree.

I tried to find a video clip of the scene, but was not able to. Thank you Media dis&dat for this text version:

Media dis&dat: "Mad Men" gets real with disability: "Joan: I'll bet he felt great when he woke up this morning. But that's life. One minute you're on top of the world and the next some secretary is running over you with a lawnmower.

Don laughs.

The three British executives enter the hospital waiting room.

Saint-John: I'm heart broken.

Don: It's a terrible tragedy.

Harold Ford: One that surely could have been avoided. Mrs. Harris, thank you for your quick thinking.

Lane Pryce: You may have saved his life.

Saint-John: Such as it is. He was a great account man. A prodigy. Could talk a Scotsman out of a penny. Now that's over.

Don: I don't know if that's true.

Harold Ford: The man is missing a foot. How's he going to work? He can't walk.

Saint-John: The doctor said he will never golf again.

Harold Ford: I'm afraid we'll have to reevaluate our entire strategy (referring to the reorganization of Sterling Cooper.)

Saint-John: Lane will remain here permanently."

Wednesday, September 23, 2009

Don't read previous post!

It was written for therapeutic purposes get my juices flowing again.

I have a terrible case of blogging constipation!

Tuesday, September 22, 2009

Checking in

A couple weeks, a couple job interviews. I like my job...and my IV-E percentages are high...but sometimes I feel ready for a new challenge.

No new job yet. I really need to hone my interview skills!

I like the challenge of putting together websites, but I have not been successful at it when it comes to satisfying customers. People generally don't know what they want...and my success has been creating websites they don't want!

My hope, though, is to parlay what I have learned into a job that requires the skills I have learned. One of the jobs I applied for involved Joomla cms.

Joomla is a open source cms...a content management system. It is a nice framework for building websites with many bells and whistles. I had success using Joomla until my websites started getting hacked! I made it through two or three hackings. People would add malicious files to my websites, or they would insert malicious code into my files. It came down to weeding through my files, directories, and mysql databases to delete the bad stuff.

Not easy!

I tried, but was not successful, in figuring out how to properly secure my websites. An overly secured site does not come up at all...underly secured are easily hacked.

I want to learn how to back my websites up. I also want to find a webhost I can afford. All these webhosts have low monthly costs...but they require you to pay for 1, 2 or 3 years at once.

I have been using the free stuff - Google Sites, Google Blogger, Google App Engine. The first two are very easy and non-technical to use, but the coding is not very ADA compliant, and the customization options are limiting.

I have been looking at wordpress lately. The free version does not seem to let me adjust the font. If I can find a decent webhost at a good price, maybe I will give it a shot.

I will see...

Monday, September 21, 2009

The "Bailout" admiistration

This bailout makes sense to me. Restructuring newspapers as nonprofits.

If traditional news sources were to disappear, the internet would become one giant blog.

Don't get me wrong, I like blogs...but we need to preserve the "Fourth Estate", the "hard news". Whether that really still exists is debatable.

Even so, I support efforts to keep it alive.

Obama Considers Newspaper Bailout - The Daily Beast

Now, how about a "Troy bailout"?

Sunday, September 13, 2009

Football hero with CP...who never was able to play

Commentary: Fan gets town's special tribute - "The whole town had fallen in love with him. All of the quarterbacks who had ever thrown touchdown passes in that stadium, all of the linebackers who had ever made jarring tackles, all of the field goal kickers who had ever won games for Logan as the scoreboard clock ticked down ... and the place was renamed for the boy who could never run a single stride."

Friday, September 11, 2009

Unemployed to homeless blogger

A great rags to work modern economic tale:

Blogging begins turnaround for homeless woman -

Check out Brianna's blog, The Girl's Guide to Homelessness. Most of us are never too far from this. Rather than letting it keep her down, she learned about homelessness, wrote about it, and became a resource on the issue.

Be sure to read "Where it all began":

In July of 2008, my corporation had mass layoffs. The economy was beginning to crumble, and the auto industry was the first to be affected due to the skyrocketing prices of gas. Over 280 out of 500 employees were laid off, and I was among them. The company that I worked for was enormously kind and fair to each and every one of us, and compensated us well with a severance package, so I was OK for a while. I did some temp-to-hire work for an environmental engineering company for a few months, but they ended up having layoffs right before Christmas 2008 and again I was out of a job. Since then, I have been searching for employment without success. I am on extended unemployment benefits, but I prefer actual work. Salaries have been slashed by at least 20% (often more) so I have no hope of making what I used to, but that is to be expected – I’m in good company, at the moment it’s a status symbol simply to have a job at all.

Initially, the idea of this terrified me. Here is a summary of the commentary that first ran through my head: This would never happen to me. I am not the kind of person that lives on the street. I have a life, I have friends, I have a dog, I have stable employment and residential history, references, education, skills, talents – I have worked hard all of my life to ensure stability for myself. How did this happen, HOW CAN I DO THIS?!?!?!?!

I suppose greater horrors than this can be imagined, but this would be high on my list of unimaginable horrors. The strength and grace with which she dealt with this is a movie I would want to see.

Friday, September 04, 2009

Her smile melts Mum's heart

My cerebral palsy is a hassle at times, but when I read stories like this I am thankful for all I have, and I am thankful to God for giving each of us grace and strength to deal with whatever we have to deal with:

Daily Post North Wales - News - North Wales News - Severely disabled North Wales girl given new lease of life: "TEN-YEAR-OLD Kara Downie melts her mum’s heart when she smiles. For her “happy little personality” shines through a raft of severe disabilities, including an incredibly rare condition where large parts of her brain are missing.

The youngster suffers from Holoprosencephaly, a major defect of brain formation where, instead of normal brain tissue, the skull is swelled with extra cerebral spinal fluid."


The problem spurred Caroline to get in touch with Surrey-based charity React (Rapid Effective Assistance for Children with potentially Terminal Illness), who have now provided her with a portable concentrator which can be installed into the family’s mobility car.

Gov 2.0 ...why haven't I heard of this?

Eric calls me a geek all the time, yet this is the first I have heard about Gov 2.0:

Gov 2.0 Expo Showcase - Co-produced by TechWeb & O'Reilly Conferences, September 08 Washington, DC

It will be a platform to provide web services to government agencies and to private citizens:

I moved our website,, over to the Google App Engine, which is the same idea.

Wednesday, September 02, 2009

Give 'em hell Glenda!

Jodie and I were struck by this incident, as we could see this happening to us:

Do It Myself Blog - Glenda Watson Hyatt » My Response to Nurse Ratchet: "Both my husband and I have cerebral palsy and use power wheelchairs for mobility. Yet, we live independently, without any attendant care. We have done a fair bit of traveling without any companions. We work well together as a team, as a married couple, to problem solve and overcome any obstacles.

Saturday afternoon, once his nurse had supervised his safe transfer into his power chair, we mentioned to her that we were going down to the cafeteria for a drink and for a change of scenery. She flipped! She said my husband, who turned 50 today, couldn’t leave the floor without a relative. My husband explained that I am his wife. The nurse told him to wait for his parents, who are elderly. She continued that we would have to take the elevator and that, if something happened, I was “incapable”."

Help me help Kyle's sister...

I wrote about this tragedy last November:

Kyle was a special needs 12 year-old with autism. The father, Ryan, was overwhelmed with his son's needs, and apparently despondent his own issues. Ryan took both of their lives.

Last week I got an email from Kim Dutter. She is Kyle's sister. Kyle was a huge part of her life. She was away at college, her first year, when this happens.

Kim is angry at what her father did. She misses her brother, the sunshine of her life. She wants to see something done in Kyle's name to prevent this kind of incident from happening again.

My initial thought was some kind of legislation to provide more supports for families with high needs kids.

I just don't know. I am confused. The health care debate is showing how splintered we are as a nation in taking on one another's needs.

What can we do to honor Kyle? What can we do to comfort Kim?

My heart is heavy.

Prayers for Lyudmila

Lyudimila is a coworker I have ever met except through email.

Prayers for her and her family...such a sad loss.

Mother grieves son who died trying to turn life around |
- Portland, Oregon
| News