ADA is 25 years old!

I grew up with a minor hearing loss in an age where those with “special needs” were segregated from the masses. I wasn’t channeled into special education, thank goodness. I succeeded along with my friends. I even managed to earn a college degree in music, despite a certain professor who insisted that my hearing loss meant I shouldn’t be in a conservatory of music at all.

Years and years later, a principal at Amigo’s school glared at me and growled, “Don’t throw ADA at me; it makes me angry.” Angry or not, we threw IDEA at him and he had to follow the law.

What’s ADA? What’s IDEA? Why are they important to me and important to my family? I just posted on Connections Academy’s national blog. Read and enjoy!

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Another Use for a Coat Hook

I might call it repurposing. Amigo just called it “lunch”. We had to run an errand in Green Bay, so we took our Fun Day Friday lunch to a wonderful family restaurant across the street from Lambeau Field. We admired the decor (lots of Packer history) and ordered good food (and we went easy on the trainee). Amigo enjoyed exploring our little booth, including the coat hooks on the side.

It's July. We didn't have coats.

It’s July. We didn’t have coats.

A hook is a good place for a white cane, too.

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Measles?

I searched my archives for measles or immunizations, and the only related topic I found was flu. I get a flu shot every year. Amigo gets one every year. La Petite, now that she has medical coverage (Thanks, Mr. President!), gets her vaccine, too.

It’s not influenza that’s on people’s minds today. It’s an illness that was thought to be eradicated in the United States: measles.

I remember getting a mumps shot when my friend Julie had mumps. The vaccine was a new one; it wasn’t routine yet. It must have worked; no mumps for me. I remember getting a rubella vaccine when I was at the hospital after giving birth to La Petite. Routine blood tests showed I wasn’t immune, and I got the shot before going home. But measles? No memory of the illness or the shot.

People born before 1957 are considered immune because they were most likely exposed when they were young. I’m a 1960 baby boomer. Where does that leave me?

I did what a lot of baby boomers do: I emailed my mother.

According to Petunia, I may have had a mild case of measles when I was very young. She followed up by saying she remembered getting me a measles vaccine, but doesn’t have a written record.

So around and ’round and ’round I go. Do I need the shot? Nobody knows. While I dilly dally about getting a lab test to find out yea or nay, the city health department is setting up a vaccine clinic early one morning next week. I might just give in, get up, and go. It can’t hurt. Well, it could hurt… never mind.

 

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The O.K. Chorale Runs Errands

I had a few alternate titles, and none of them really worked. The O.K. Chorale Holds Up a Pharmacy didn’t sound quite right. The O.K. Chorale goes out for Drugs didn’t really make it, either. The O.K. Chorale Stops the Pharmacist in his Tracks is a bit of an exaggeration. Not much, but a bit.

You’ve already guessed, my friends, that we had trouble once again with the Pharmacy That Shall Not Be Named. This time it wasn’t the people – not totally, anyway. For the most part, it’s the system. Or should I say systems, plural? Maybe so.

We rolled up to the hitching post, settled our horse (a Subaru) in a stall, and split up to make better time. Chuck went one direction to get a quart of milk. I followed Amigo to pick out a package of lip balms. We converged together at the pharmacy window. We’d just approach one by one, and we’d be done in a flash. Right? Wrong.

One register wasn’t working. Its card reader was out of service, so that window could only take cash. Works for me, I though, and Amigo, too. No problem. But (wait for it) — there’s more.

All in good time, one of the assistants called us up to the window. She’d already pulled out meds for all three of us. Sad, I guess, that we’re such regular customers that she knows our names, but I’ll give her points for customer service.

But as luck would have it, anything that can go wrong will go wrong. Amigo’s prescription comes in two bottles, and they’d only filled one. I’d called in the numbers for both bottles, so there was confusion. Amigo was a strong self advocate and reminded them that he doesn’t like the childproof caps and that the higher dose capsule goes in the bigger bottle and the lower dose in the short one. They know this. It’s all on his record. But somehow, half the prescription got lost in the shuffle, and the sizes and caps on the bottles was the least of their worries.

So instead of Amigo going first, I stepped up to the second window and received my one prescription. One? I thought it was two? When I called to check, the staff member on the phone told me there was another medication coming due. As the line got longer behind us, I said never mind, don’t worry about it, I’ll get it at a later date. It’s not urgent. Let’s check out now before the milk Chuck bought starts to curdle.

While all this was happening at my window, Chuck handled his order, the fastest of the three. Amigo was still waiting for the pharmacist to rush through filling what should have been done already. I thought I had sorted through my own one lamp or two dilemma when the pharmacist came over for the required Consultation. He looked at my papers and said “One? Isn’t there a second?” Apparently, the paperwork was such that it indicated a second medicine. One if by land, two if by sea, and meanwhile, the line was getting longer and longer behind us.

Finally – and I do mean finally! – Amigo and I checked out and left. Amigo got his chap sticks, and I got away without yet another stupid small single use plastic bag. I only had to say “I don’t need a bag” three times.

With a deep breath, we mounted the patient horse (Subaru) and headed home. And I thought to myself, “Self, wasn’t there a mixed up text message regarding a medication earlier this week?” I’d gotten a phone call from the doctor’s office saying that I’d requested a refill on a powerful medicine I’d just begun taking, and they were worried. Was I okay? Um, yes, I was fine, and I hadn’t requested a refill. When I called in later, pharmacy people chalked it up to a mix up in the “Get your Refills by Text Message” program.

At long last, we made it home. I put excess paper (most of it ads for the text message refill program) through the shredder, placed my meds and Amigo’s in their correct spots in the medicine cabinet, and left Chuck to his own devices.

Dear Pharmacy That Shall Not Be Named; I hope the O.K. Chorale can stay far away from your window for a long, long time. Don’t bother to text. It’s not you, it’s me. No, I have to admit, it’s you.

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Friends

When La Petite was in school, we saw her friends a lot. We made them welcome at our home, and they came over in large groups to hang out and drink our lemonade and sodas.

It’s a little tougher for Amigo. His best friends are scattered all over the state of Wisconsin. He met them at the state school for the blind, which serves the entire state. Luckily, Amigo and I enjoy road trips. As soon as we set up our trip to the Great Lake Superior area to see a Big Top Chautauqua show, he mentioned that one of his friends lives in a tiny town close to our destination. Amigo (who is showing major skill in arranging visits – future party planner, perhaps?) got in touch with his friend’s family through Facebook and made all the arrangements for us to stop by and visit.

The next day, they went fishing together.

"Chuck" helps the two young people bait their hooks

“Chuck” helps the two young people bait their hooks

Canes do not do double duty as fishing poles.

Canes do not do double duty as fishing poles.

I’m not much of a fan of fishing, but it was fun to go along and be a spare sighted guide from the car to the end of the dock.

Neither caught any fish — just algae — but it was fun. Her family sent us home with a package of their own home-made Polish sausage. Mmm – it was delicious. We left a thank-you of a few of my own homemade jams and pickles.

Readers, what do you like to bring along for getting-acquainted gifts? Since I started canning, it’s been easy. How about you?

 

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The Second in the series: Awareness Encores

This post originally aired about one year ago. Since then, the magic number of prevalence has become 1 in 67, up from 1 in 88.

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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Back to School – January Edition

Going back to school, ending a break of decent length, all of that starts today. I’ve checked in on my school mail account(s) a few times because I have ongoing plans and commitments pending. I have not, however, graded any work during break. Progress reports will be at the top of my to-do list all too soon.

I looked back to posts from a year ago. I expect much of the same, mostly. Mainly. I think, probably. For example, I have a blanket and several pair of fingerless gloves at my desk.

The pair on the left is warmest. The pair in the middle goes with everything. The pair on the right goes with nothing. I’m set for any occasion.

I know I’ll be getting envelopes decorated like this:

Some envelops will look like this, so overloaded that they’ll need duct tape to seal them.

As I was browsing, I saw last January’s post titled “Notes to Teacher Self.” I pulled it up, of course, and found notes that are still relevant to my teacher self a year later. Here are the highlights.

  • Note to reading teacher self: When a student doesn’t have her book, always ask why. Why? One of my middle school struggling readers didn’t have her copy of The Cricket in Times Square because (drum roll) her 16-year-old brother had picked it up and was reading it. Ah, I love this job.
  • Note to PR-loving self: It’s okay to say no. When approached about an interview with a local rag that has been notoriously anti-teacher, No is a valid response. Feel no guilt.
  • Note to role model self: Smile, don’t laugh, when a student struggles in writing to a prompt because “he doesn’t know anyone with a disability.” If they don’t remember I’m hearing impaired and it’s a disability, I’ll take that as a compliment. It means my disability doesn’t interfere with the way I do my job.

And that, teacher self, is one to remember.

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And on we go, into 2014

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

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

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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