Tag Archives: disabilities

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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Frustration becomes Normal

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Oh, it’s time for another bout with the Clinic that Shall Not Be Named and the Pharmacy that Shall Not Be Named. This time, I’m too tired to be upset. I’m just resigned. It’s not worth it to expend any more energy on a system I can’t use effectively, one I certainly can’t change.

Day 1: Called clinic for Amigo’s New Doc regarding renewal of a prescription. We had been splitting the pills for him so he could take a lower dose, but the pill is so small the splitter doesn’t work well.

Potential solution: leave a message for doctor asking if he will renew this with a change to a lower dose.

Actual result: This type of call has to go through triage, and triage only takes phone calls between 8:30 and 4:00. I called at 4:05. No voice mail available, no human being in a position to take a message and pass it on to New Doc or his staff.

Next step: try pharmacy. Maybe they can contact New Doc through their system.

 

Day 2: Called Pharmacy that Shall Not be Named. Explained Amigo’s situation, asked about lower dose and whether they could communicate with New Doc. Yes, they could communicate with New Doc. No, a lower dose is not available. We’ll have to keep splitting pills.

Day 2, Part 2: Still talking with Pharmacy that Shall Not be Named, I asked about my medication for blood pressure. According to a note sent through the messaging system at the Clinic That Shall Not be Named, Family Doc sent a renewal to the Pharmacy That Shall Not be Named almost a month ago.

First step: Ask for a person, not a recorded phone call.

Second step: Wait on hold.

Next: Talk to pharmacy tech, who says there is no record whatsoever of a prescription coming in on that date.

Finally: Pharmacy will contact Family Doc’s office and ask questions.

Day 2, the Sequel: Brought up the My Messages account, found the message stating the prescription had been sent on the 13th. Sent another message stating that pharmacy has no record of said prescription, and asking what happened. 

Next Step: wait. Hope the new meds get settled before the current supply runs out.

Step that Cannot Be Taken: Inform Clinic That Shall Not be Named that their so-called communication system really, really stinks. Frankly, I can’t even be angry anymore. I’m just resigned to the fact that I’m stuck in the mud of a patient-unfriendly system.

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Notes to Teacher Self

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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 older brother had picked it up and was reading it. Age 16, he is. 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 a high note.

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Communication

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Amigo uses an iPhone and Siri. Siri lets him text and all kinds of other tasks even though he can’t see the phone. If I need to reach him by day while I’m at work, I send him a text. He usually answers immediately. A few days ago, he sent me this memo.

“We’re under a three snore emergency.” It’s okay, he wasn’t falling asleep, he was just telling me that the city had declared a snow emergency and with it, no on-street parking.

He sent Chuck the information about the last of the Andrews Sisters passing on, but somehow mixed it up so it sounded like Chuck himself was headed toward that great harmonizing trio in the sky.

My favorite, however, came the day he sent me big news he’d heard on Facebook.

“Your cousins had a baby girl named Napoleon.”

Really?

 

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Progress in baby steps

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Ah, the canes. The candy canes are gone, the cookies (almost) eaten, the candy cane infused peppermint ice cream is history. The only canes remaining are the ones in the corner.

cane collection in a corner

Amigo’s is the long white cane with a red tip. Mine is the shorter support cane. It may look black, but it’s actually a dark green that suits my personality. I use the cane almost any time I leave the house — work, shopping (not often), appointments, etc. It’s good for me in many ways.

The news, if it’s news, is that my left side is showing signs of recovery. The neurologist (with the cool shoe wardrobe) checked my reflexes, and my left leg actually kicked. It didn’t move as much as the right does, but it moved. The last time she checked my reflexes, the left leg didn’t move at all. It just sat. This is improvement – significant improvement.

Doctor Shoes reminded me that recovery from an episode like mine, similar to stroke, can take a while. Healing a broken bone may be measured in weeks, but when nerves are healing, it’s more likely to take months. I think she saw my deep sigh at this one, because she told me to keep up PT and hang in there.

The deep sigh, however, wasn’t one of disappointment. Resignation, maybe, but also relief. Slight recovery means progress, and progress leads to more progress. Her tests confirmed what I was feeling; I feel a little stronger now than I did two weeks ago, when I felt stronger than I had two weeks before.

The cane is still my accessory, my tool for getting around. It will remain by my side and in my cubicle and in my corner. Add that to the medical pros in my corner, and I think I stand a good chance of walking to work again – sooner or later.

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Bulleted Lists

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Ah, the bulleted lists. So useful, so common, so easy to skim and scan. Monday’s lists were reminders of Friday’s. No matter how we try, the losses add up to more than a list.

The lists in my inbox were anything but simple.

From the CEO: general guidelines to consider while talking with students, including:

  •  Address the issue rather than pretend nothing happened.
  • Normalize the day as much as possible.
  • Explain why the flag is being flown at half-staff.
  • There will be many “teachable moments”.
  • If it comes up, it may be useful to review our lock down and code-red procedures.

Lock down and code red? We thought of nothing else. In our virtual school, we work from cubicles and contact our students by phone and computer. We talked among ourselves about procedure and theory, how to cope, how to hide, how to get the phone call out to 911. Nothing official, no staff meeting, but our principal understood our need to talk.

Speaking of which, the principal sent out a memo to families that included its own bulleted list.

  • Try and keep routines as normal as possible.
  • Limit exposure to television and the news.
  • Be honest with kids and share with them as much information as they are developmentally able to handle.
  • Listen to kids’ fears and concerns.
  • Reassure kids that the world is a good place to be, but that there are people who do bad things.

Some people do bad things, but most of the world is a good and safe place. That’s a tough sell for many of today’s kids – and adults. The last line, however, is important.

Let’s move on to the last list of the email day: a memo from the director of special education. His list was the shortest, but perhaps the most valuable of the three. He reminded us that the shooter was rumored – rumored – to have Asperger’s. If the young man was on the autism spectrum, or if he wasn’t, he was only one person. Keep these truths in mind.

  • Asperger’s is a developmental disability that does not cause people to think or act violently.
  • People with disabilities are no more likely to commit violent crimes than those without disabilities.
  • People with disabilities are more likely to be victims of crime than those without disabilities.
  • The shooting in Newtown was the act of one individual and should not reflect on any group of people, disabled or otherwise. (emphasis mine)
So that’s all, folks. Let’s now keep the bullets in their lists and far away from our children.

 

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Cane, not candy

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The physical therapist rattled off several reasons why using a cane would be a good idea while I’m recovering from the stroke-that-wasn’t that weakened my left side. I promptly forgot most of the reasons, but I did remember how to properly size the cane and how to use it correctly. Here is my version of the top ten reasons Daisy should use a cane. I’m sure you can figure out which reasons came from the PT and which came from my own mind.

10. Amigo is no longer the only cane user in the family.

9. I can wrap red ribbon around it for the holiday season.

8. Using a cane will provide support and limit fatigue.

7. A cane is a handy defensive weapon.

6. It lets me rationalize using the elevator.

5. The cane prevents me from developing an odd gait that favors the weak side.

4. Along with my adorable new vintage hat, it makes me look “professorial”, according to at least one coworker.

3. It’s a great prop – allows me to break into a softshoe dance in the middle of the halls.

2. It reminds me to slow down, I might be moving too fast. I’ve got to make the morning last!

1. It’s a great fashion accessory.

 

 

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Homecomings – an encore presentation

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My “children” are now 25 and 20. This post remembers a weekend evening a few years ago. Was it only a few years? Oh, my.

The thing about kids is that they grow up.

Homecoming Week at Amigo’s high school just ended. A chronological recounting won’t do; the impression of the week is more of a scattered collection of events.
The bonfire had a perfect night — that is, the rain date had perfect weather.
Spirit Days! Must discuss spirit days.
On “Dress Like a Pirate Day”, Amigo wore a bandanna on his head and someone gave him an eye patch to go with it. Substitute his white cane for a peg leg, and there’s one cool pirate.
Decades day? He chose the 80s and wore a shirt featuring the Packer quarterback who preceded Brett Favre. Okay, trivia buffs, can you name the quarterback?
At the football game, Amigo sat with us, but he was never alone. Kids kept walking past and saying hi and calling him by name. The homecoming king himself, the most popular boy in the entire school, sat and watched the game and talked with Amigo for quite a while. Husband joined us after work, bought supper from the concession stand and bought a sweatshirt from the booster club as the sun went down and the temperature dropped.
But the most glaring sign of growing up was the dance. I picked him up at midnight, tired, hoarse, thirsty, grinning from ear to ear. We came home and found La Petite had caught a ride home from college with her boyfriend to spend a night here with us and with her bunnies.
And that’s where it ended: my two teenagers, one 19, one 14, sharing homecoming stories on the couch after midnight. The high school freshman and the college sophomore chatted and laughed and compared notes. I don’t know how long they stayed up talking about pep rallies, football games, dances, and spirit weeks. I’m sure they didn’t even notice my absence when I went up to bed.

I guess the great thing about kids is that they grow up.

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Another Reason to be Thankful

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This could have gotten lost in last week’s holiday posts. It could have been mixed in with my friends and their Facebook “Thirty Days of Thanks” memes. It could have been buried by the busy-ness of a holiday week, when few regular readers have a chance to keep up with their favorite blogs. This piece didn’t get lost because I shared it initially with a small number of people. Now that the first in a long stream of holidays has gone its merry way, I’ll share this item with the rest of the world.

Background: I composed the first draft for our national blog last year, but it wasn’t really suitable for what was needed at the time. The marketing folks who run the web sites contacted me on Monday and said, Hey, Daisy, can we run it this week? With a few minor changes, it will make an excellent post for a Thanksgiving theme.

Of course I said yes. The revisions were, as they said, few. My content was still mine and still sounded like my voice on paper. So, folks, don’t be shocked by the picture (I’m not a smiley coffee mug in real life) or the real name. Follow the link below for my most recent contribution to the Connections Academy national blog..

I’m thankful for a wonderful job in a rewarding and evolving field. Read the entire story here.

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Cracks in the rose colored glasses

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I like to claim I’m an optimist. I see the rain barrels as half full, not half empty. I’m pleased by simple achievements.

Whatever is going on in my brain – stroke, migraine, or otherwise – makes the positive difficult to find. If I’m honest with myself, (which I’m not very often because it’s tough to face the truth that the worst may be yet to come), there are positives in this situation. Unfortunately, most of the positives are more along the lines of “At least it’s not….” which is a poor excuse for a bright side and more like a silver lining in a bank of tornado-producing thunderheads..

But here goes anyway.

I have a good ER nearby – less than 10 minutes away – which meant Chuck could leave the hospital while I was getting my MRI and make sure Amigo was doing okay (he was) and then come back to my side when the doctor had information. 

I work with compassionate people. They’re concerned, and they ask how I am, and yet no one is nosy. They accept what I’m willing to tell and respect what I don’t want to say. Within three minutes of my arrival at work this week, I had a stack of phone numbers from people willing to give me a ride to work if I feel unable to drive.

The neurologist wears awesome shoes. Dark red suede short boots with a jet black zipper center front – don’t judge me, people, I enjoy footwear. It’s a simple pleasure.

Still upsetting:

  • the inability to walk to work in nicer weather
  • the need to grab a wall or a countertop when I’m wobbling
  • the fear that the leg will fall out from under me while walking down a hallway or carrying a hot cup of coffee
  • parking in the crowded lot so I can use the elevator
  • feeling off-balance unexpectedly
  • the sheer irritation of feeling perpetually numb on one side of my face
  • the unpredictability of the weakness and wobbles in my left side overall
These make it tougher to don the rose-colored glasses each day. Optimism must be tempered with reality, and that reality is cloudy with a dense fog advisory carrying low visibility when I try to look ahead.

And yet, I feel thankful every day that the effects of this condition, whatever its name might be, have so far been purely physical. Nothing indicates cognitive trouble. My speech is clear and my language functioning is still strong. I can communicate. I can still think.

Maybe those rose-colored lenses have a little more wear left in them.

 

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