Tag Archives: disabilities

And on we go, into 2014

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Yesterday I described a few highlights and lowlights to what I’m now calling the Year of Survival, 2013. To follow up, I’ll address the other part of the challenge: What word reflects my intentions for 2014?

Many of my ongoing projects got set aside in the mess that was 2013. The manuscript for the book Educating Amigo is still in limbo, and sending out submission packages became less of a goal than learning to walk well and handle stairs without a cane. The book project is back on a front burner now, and I hope to reach out to a another potential writer/editor for guidance.

I wrote a few short grants at work, none successful. I don’t mind losing the grants; I learn a little every time I do the research involved in any project funding request. Looking ahead, my grant applications will still focus on our goals of increasing family involvement and improving reading skills. I might reach out to more grantors who have the same mission, rather than more general resources.

In a post on my employer’s national blog, I suggested setting goals in the form of a 3-2-1 summary. 3 good habits to keep in place; 2 bad habits to break or leave behind; and finally, 1 positive change. Let’s see how that looks in my own life.

3 good habits:

  1. Put my health first. Reach out to health professionals as necessary.
  2. Eat local, cook from scratch, and preserve (can and freeze) to keep the family’s menu healthy and delicious. 
  3. Rest. Make sleep a priority.  

2 bad habits to leave behind:

  1. Stop putting my health at risk by putting off routine care – this is a dangerous route to follow.
  2. Don’t sweat the small stuff; keep the big priorities on top of the to-do list. 

And in conclusion, 1 positive change to put into place:

Get my home office in shape and use it – for book work, possibly for summer school, and also for privacy, peace, and quiet.

Back to the first question: What word reflects my intentions for 2014?

Reach. Reach out to those who can help keep me healthy and keep my brain and body functioning properly; reach for resources that can help with grants for my work and help with the publishing process; reach for the sky, but keep at least one foot on the ground for balance.

Readers, how about you?

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Captions are Entertaining

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The NFL sees protests across the country asking that the Washington Redskins change their name to eliminate the demeaning racist image their current name and mascot portray.

The team and the NFL should have a talk with the people who add the closed captioning to their broadcasts. The scene was this: Washington at Green Bay, kick-off at noon on Sunday, with a protest outside the stadium at the Oneida gate. Elsewhere, as people watched the game on their home or bar television sets, those with closed captioning saw the visiting team referred to as The Washington Red Cross.

Chuck kept channel surfing through his own station to make sure they were still on the air with their Christmas Eve mass. I noticed the captioner didn’t quite get the gist of it when I read, “…father, sun, and holly ghost.” Protestant caption-writer? Not Catholic, for sure.

Then I was watching NFL football with Amigo, and the live captioning referred to Carolina Panthers’ quarterback Cam Newton as Cam Putin.

Let’s examine the possibilities here. 1. The network could have borrowed a captioner from the news staff, one who knows current events in Russia better than he or she knows the NFL starting quarterbacks. 2. The auto-correct feature (not unlike that on cell phones) may have grabbed the basic sounds and missed the first consonant. 3. Closed captioning technology hasn’t evolved as the need for captions and widespread us of captions has grown.

I didn’t include “All of the Above” as an option, but that’s probably the best answer. Captioning technology does have automatic fill-in-the-blank features. The people trained to write the captions that appear on our TV screens may or may not have knowledge of the main topic – in the last example, NFL football.

I expect transcribing live captions must be a challenging job. There’s no rewind or DVR when the announcers are commenting on fast-breaking action of a football game. However, it’s time. It’s time for networks and local stations to get serious about closed captioning. It’s time to go beyond just meeting the bare minimum requirements of disability laws, and time to provide a quality product for consumers.

Meanwhile, captions or no captions, it’s time for My Packers to rally around their quarterback, Aaron Rodgers!

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The Eyes Have It

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Oh, readers, it’s been crazy around the O.K. Chorale. In the midst of Christmas and birthday shopping, in the throes of one health issue after another, my left eye decided to go its own separate way.

Translation: the retina detached in my left eye.

In lieu of a complex narrative, here are a few highlights.

I learned:

  • the difference between Urgent and Emergency surgeries
  • How to reattach a retina in three easy steps (I’m kidding — do not try this at home)
  • why detailed protocols in surgery double and triple check everything
  • how to be guided rather than be the sighted guide
  • how much I miss reading when my reading ability is limited
  • I can tolerate three straight days without coffee if I must.
  • it’s possible to be sedated and still feel tense

Access to medical records is important. No, it’s huge.

  • In the ER Wednesday night, the ER doc read through the notes from Dr. Shoes, the neurologist, before even seeing me. He was able to rule out another episode similar to stroke almost immediately.
  • Eye Doc from cataract surgery was the opthalmologist on call Wednesday night. He had my history.
  • By the time I saw Dr. Retina Thursday morning, he had already started the wheels turning, scheduling a surgery room and all its trimmings and trappings.
  • Even though my records were available at the click of a mouse, pre-op procedures include verifying everything.

You may have noticed a hint about verification and double checking all details. When I walked in to register at the Alewives Surgical Center (not its real name), the clerk pulled up the file and said, “Oh, you’re having surgery on your right eye.” “No,” I corrected, “it’s the left eye.” She dove into Double Check mode and made a call to verify which eye this should be. As dear husband “Chuck” joined me, we decided to verify this ourselves each and every step of the way. After getting blood drawn, having an IV hooked up, changing into OR fashion, and talking to the anesthesiologist, Dr. Retina came in with a sharpie marker and made a note next to my left eye. He joked that we’d probably heard of mistakes, they were extremely rare, and this was one way he made sure he got the correct eye. We told him that I’d been met at the admissions desk with a greeting that included the right, er, wrong eye.

Dr. Retina was not pleased. After my surgery was finished, he had the trail of information traced until he’d tracked down the source of the error. The confusion came in the game of telephone from ER Doc to Doc Cataract to Dr. Retina. Somewhere in that train, Left was noted as Right. The preliminary information came into Dr. Retina’s office as Retinal Detachment, Right Eye. He corrected his records after examining me, but somewhere this incorrect detail slipped through the cracks.

So folks, friends, family, and fellow bloggers, the left eye is now healing, and my plans for the next few weeks are changed a bit. Here we are, almost at Christmas, and suddenly any shopping plans are modified. Here’s the new to-do list.

  • Incorporate eye drop schedules into daily routine.
  • Finish ordering online ASAP for getting things shipped in time.
  • Modify gift list to include more homemade and less store bought.
  • Make an accurate list and go out shopping with Chuck at the wheel.
  • Hide Chuck’s gifts at the bottom of the cart so he doesn’t see them.
  • Cards? This year cards might not go out. Love you, peoples, but there are priorities.

 

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Driving Amigo – and vice versa

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We enjoy road trips, Amigo and I. A simple trip to La Petite’s apartment takes over two hours, and we make it a good time. Part of today’s trip was Saturday’s Public Radio line-up. We left the house to What ‘Ya Know with Michael Feldman, and we arrived in the Lake Community to the closing of Car Talk. We took a short break during Feldman’s town of the week to pick up a quick lunch, and then hit the road again.

Picking up lunch was a treat in itself. We stopped on a Strip to end all Strips and, lured by clever advertising, looked for a KFC. We wanted to try their Go Cups in the minivan. The results were favorable; both Amigo and I liked our chicken and potato wedges. It beat the heck out of the golden arches for taste and quality – and fun, too.

Let’s look back a few years. Amigo went to the DMV to get his state ID. As he tapped his white cane across the lobby, a teacher aide called out a greeting. “Hey, Amigo! What are you doing here?” My boy answered without hesitation; “I’m taking my driver’s test.”

Picture the poor teacher aide with her jaw dropping to the floor in her driver’s license picture. When you’re done laughing, come back.

Revving up the engine!

Revving up the engine!

The jalopy pictured was part of an informal gathering in a tavern parking lot. It wasn’t a strictly regulated “Don’t touch anything!” It was more of a “Come on up close and explore!” The car owners saw Amigo’s enthusiasm along with his white cane and invited him in. This one saw potential; he ushered Amigo into the driver’s seat and showed him how to start the car. Vroom!

When we plan our Route 66 journey someday, maybe he can spell me at the wheel.

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Amigo – and why his blog name is Amigo

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Long ago, when Compost Happens was in its infancy, I nicknamed my family. Amigo is short for Amigo de Animales. He’s friend to animals, and they love to make friends with him.

These two are no exception.

Both Echo and Q want his attention.

Both Echo and Q want his attention.

Echo, on the right, is a service dog for Amigo’s friend. Q, a former breeder, is now a pet. Both are big, beautiful, and friendly as can be. This is the only picture that turned out; the others were all blurry as Echo and Q fought for Amigo’s attention.

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The past revealed – and then shredded

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I’ve been shredding mountains of papers, including foothills of ancient tax records, aged bankbooks from when banks used actual passbooks, receipts for various long-ago purchases.

One peak in this mountain range seems to be medical. Those EOBs (Explanation of Benefits from the insurance companies) tell stories of their own. I found:

  • records from my early troubles with asthma
  • the hospital statement from Amigo’s birth. He was a bald baby boy back then!
  • the doctor’s prescription for my maternity leave when Amigo was born
  • another prescription from the same doctor, this time suggesting a leave of absence for fatigue and gastritis. This doctor would eventually put the pieces together and diagnose my first depression.
  • Amigo’s early health statements, decorated with handwritten notes about where to go and what to do next.

I learned a few things.

  • Those colorful coated paper clips really do last a long time.
  • Ordinary paper clips do eventually rust.
  • A single staple might go through a paper shredder, but multiple staples can cause jamming.
  • Our new-ish shredder is one tough appliance. I just wish it had a bigger drawer so it could shred more before signalling “Full! Empty me now!”

I shredded checkbook registers, a few old checks, and bank statements. And I said to myself:

  • Did I really choose these checks with a teddy bear pattern?
  • Did Chuck grimace every time he wrote one?
  • I shopped at Wal-Mart? These are old, old, old check records.
  • My handwriting was certainly neat back then. What happened?
  • The insurance company we had back then put us through the wringer. Did they train their customer service people to be rude, or were they naturally nasty?

But those are stories for another time, in another venue.

Meanwhile, back at the ranch, the homestead known as the O.K. Chorale, I just keep shredding, shredding, shredding.

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Reasonable Accomodation

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Dear iHop;

We’ve been customers for years. In the beginning, you told us you didn’t have the Braille copy of the updated menu. Five years later, our local iHop still doesn’t have a Braille menu. Do you wonder why we continue to go to the neighboring pancake house, Blueberry Hill? If we can’t get a Braille menu at either place, we’ll choose local every time.

Dear Movie Theater;

You tried, and we appreciated it. The ad said that descriptive narration was available. A manager brought out a headset and receiver that would bring that narration to Amigo. It didn’t work. Fortunately, we’re well versed in sharing what’s purely visual on the screen, and Amigo is skilled at inferring.

Dear nearby public library:

You hearing loop in the conference room is terrific. We came to hear an author during the local book festival, and I sat in front, as usual. Then I set my hearing aids on telecoil to use the loop, and the author’s microphone was delivered directly into my ears. Wow. That was cool – very, very cool.

Dear Red Robin;

We make an exception to our “locals only” rule to visit you because you have a Braille menu. It’s an extra effort to make all customers happy, and Amigo and I appreciate it. By the way, those burgers? Mmmmm.

Dear business world;

There are a lot more hearing and vision impaired people out there who are potential customers. Take the extra step and make us welcome, and we’ll respond with our loyalty.

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Awareness Again – Can’t we do Better?

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It’s April, again. Autism Awareness Month. Now that autism numbers are estimated at 1 in 88, shouldn’t we already be aware? Shouldn’t we as a society be moving on?

Moving on beyond awareness means learning about each other, neurotypical or on the autism spectrum. Even under the old numbers of 1 in 166, the estimates indicated so many children and adults with autism that “normal” needed redefinition.

Awareness, people, is not enough. Awareness is a low form of knowledge, and knowledge itself sits down low at the base of the learning pyramid. Awareness means knowing that the student sitting next to your child in class might have autism. Knowledge and understanding come around when that child responds to gestures of friendship, perhaps awkwardly, yet making a step toward joining the social peer group in some way.

Awareness? Awareness means slapping a multi-colored puzzle-design ribbon magnet on the back of the family minivan. Understanding means that when the minivan next to yours at the red light is moving back and forth propelled by the rocking of the teenager in the front seat, you notice but don’t judge. You might offer an understanding smile to the driver if the opportunity comes up. By refraining from negative comments, a parent provides a role model for the rest of the minivan passengers.

The “R” word is also still active, unfortunately. The word Retarded hasn’t been in active use for educational professionals in decades, but it still turns up in verbal put-downs. Awareness means knowing the label Retarded is unacceptable. Knowledge and comprehension would show that anyone with limitations in learning faces enough challenges without getting their diagnosis tossed around as a playground insult.

I wore my “R” Word t-shirt on the appropriate day. That’s my awareness activity. To bring it to a higher level, I vow to stop and comment when I hear the word used: stop and educate those who would otherwise redefine a person in narrow boxes.

Now it’s time to take Autism Awareness to a higher level, too.

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The Holiday Roller Coaster finds a Level Track

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We, the whole family, have been on a roller coaster of emotions in the last month. This is one of those roller coasters that turned us upside down, swung our feet in the air, brought our stomachs to our throats and then suddenly dropped them down again. Then came a holiday weekend.

We decided to keep it simple. No travel, no major dinners, no large family gatherings.. Comfort food. Relaxation.

Chuck, the family Iron Chef, agreed on keeping it simple. He planned to get out the grill, weather permitting, and create a surf and turf. I baked a plain yellow cake in two rounds, and then Chuck made it into a bunny shape. Amigo enlisted La Petite and her friend to dye eggs. And that, my friends, was plenty.

Bunny!

Bunny!

Sometimes the best way to handle a potentially stress-filled weekend is to simply step away from the madness. We took a collective deep breath, said No to anything complex, and took care of ourselves.

That, my friends, is priceless.

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Hogwarts, the sequel

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Well, people, Amigo is settled into his apartment and we are trying to get used to life as empty nest types. It’ll be easier when we’re sure that Amigo is successfully settled into his uptown apartment and actually feeding himself regular meals. Meanwhile, you can review the internal evidence that Hogwarts does, indeed, exist in Minnesota.

A few days ago, you saw the outside and the entrance to Minnesota’s answer to Hogwarts School of Witchcraft and Wizardry. Now lets follow Amigo and his parents (Daisy and Chuck) as they scope out the fascinating place.

Conveniently located for floo powder travel

The director has a huge working fireplace in her office. Many other rooms have fireplaces, but none are this big.

Speaking of rooms, when I asked to use the rest room, they showed me to the hidden door in the wall.

Myrtle? Are you in there?

To get to the second floor, we had to go up the ancient wooden steps. Luckily, these stayed in place; none of that bad habit of changing directions every other Tuesday. Or was it Thursday?

How many staircases are in the Hogwarts castle?

On the second floor we were certain that this was a division of Hogwarts, U.S.A. Could these lampholders exist anywhere else?

Holder of the Light

There’s more to behold – later. For now, the answer to the above question. How many staircases are in the Hogwarts castle? Well?

142, of course. “…wide, sweeping ones; narrow, rickety ones; some that led somewhere different on a Friday…”

Oh, the white thing in the top picture? I honestly don’t remember. Maybe it’s the mansion’s ghost, Mrs. Pillsbury. She’s supposed to be friendly.

Readers, Amigo is enrolled at this historic mansion now. Given his outgoing and friendly nature, Mrs. Pillsbury is probably giving him tours of all the secret passageways. 

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