Life in progress


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#JusJoJan prompt the 1st – “Fingertips”

(NOT FICTION)

Did you know today, January 4th, is World Braille Day? My friend and one of our fellow bloggers, Kerry Kijewski of the blog, Her Headache, informed me of the event to raise awareness for Braille. That was last year when I was looking for prompts for Just Jot It January, but we missed the date by a day or two.

Not knowing much about Braille myself other than seeing it in elevators, I went looking for info. I found that World Braille Day is organized by the World Blind Union, an organization that advocates for the rights of the Blind.

As the mother of a Deaf child, I understand (to an extent) what it means to fight for the rights of someone who communicates differently than more than 90% of the population. In this world that we’ve come to inhabit where we rely so much on technology to keep in touch with one another, the obstacles abound.

But I don’t know much about Braille, so rather than tell you what I found online, do yourself a favor and check out Kerry’s blog and especially this amazing podcast I found that Kerry and her brother Brian host. It’s a weekly show where the focus is on educating  sighted people on the obstacles blind people face. Here’s a short 1-minute spot and article on CBC news that explains what their podcast does far better than I can. And you get to see Kerry and Brian in the studio!

Enjoy!

Photo: Badge depicts a stick-figure person sitting on a stick-figure chair in front of a stick-figure desk with a badly drawn keyboard and a monitor with stick-figure flames coming out of it. The badge reads “Just Jot It January 2021.”


Here are the JusJoJan Rules:

1. Just Jot It January starts January 1st, but it’s never too late to join in! Here, we run on the honour system; the “jot it” part of JusJoJan means that anything you jot down, anywhere (it doesn’t have to be a post, it can even be a grocery list), counts as a “jot.” If it makes it to your blog that day, great! If it waits a week to get from a sticky note to your screen, no problem!

2. I’ll post prompts at 2am my time (GMT -5). The prompt will be the word in quotation marks in the title of my 2am post. You don’t have to follow the prompt every day, but that will be where you leave your link for others to see. You’ll get a prompt for every day except Wednesday, when the prompt is simply my One-Liner Wednesday and on Saturday, when your prompt will be the Friday Reminder and Prompt for #SoCS, which will appear at about 9:30am Friday. Each prompt post will include the rules.

3. Please ping back or link to the daily prompt. To ping back, just copy the URL from the daily prompt post, and paste it anywhere in your post. Check to make sure your link shows up where you want it to, and go back occasionally to see other bloggers’ entries – the more you visit others, the more they’ll visit you! Note: A) The newest pingbacks will be at the top of the comments section. B) Ping backs only work if you’re blogging on WordPress. Everyone else must paste a link manually.

4. Tag your post JusJoJan and/or #JusJoJan.

5. Write anything! Any length will do! It can even be a photo or a drawing – you’re going to title it, right? There’s your jot!

6. If your post is NSFW, do not ping back. Please leave your link in the comments with a warning.

7. If you’d like to, use the JusJoJan badge (above) so that others can find your post more easily.

8. Have fun!


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Update on Alex

Before I go to bed, I want to leave a quick update.

First, thanks so much to everyone who left their prayers and positive wishes for us. It seems something got through.

I’ll back up a bit first, though. After I wrote my last post, my eldest son volunteered to go to the hospital for me and watch over his brother, so I did get a bit more sleep before I went.

Whilst there, I asked about Alex’s regular heart meds–I realized he was past due for them. The nurse said she thought she’d read that they were on hold … I told her he needed them every day, so she agreed to go and double check.

About five minutes later she came back with his heart meds. But. Her first question for me was, does he get fifteen mils or seven and a half mils?

The prescription is 15mg twice per day, and being liquid, it’s mixed as 2mg/ml, so he gets 7.5ml twice per day.

The doctor who’d written the order had it backwards. Had she not looked at the bottle and just read the doctor’s orders, she’d have overdosed him the medication that slows his heart rate by double.

Thank goodness for eagle-eyed nurses.

And again, thank you for your well-wishes. He might be out of the hospital tomorrow, or if not, Monday.

I left his signing dictionary at the hospital, so if they’re really stuck, they can look it up.

Oh, and he still hadn’t slept when I got there. He stood and looked out the window all afternoon–for about six hours–watching for me to arrive. When I left tonight, he’d been up for 38 hours aside from a one-hour nap. I hope he’s sleeping now.

 


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The Advocate

I’m not sure if this is going to come off as a tired rant, a tirade, or an attempt to show others that they’re not alone, but here we go anyway.

Advocating for one’s family is a ball-buster. Bureaucracy makes it so that the people working at the level the public deals with on a daily basis in the schools, and all the way up to the federal government, are in a position to simply throw up their hands and say, “Sorry, this is the way it is.” Which makes it necessary for us advocates to go above their heads. But it’s not as easy as just making a phone call. Oh no. There are “proper channels” we must go through. Forms to fill out and send either by snail mail or fax machines we have to drive around town to find and then spend money on.  And then there’s the wait. The wait that is so damned long we forget whether we do indeed have to just wait or follow up. Follow up? Oh yes, start at the bottom again to get the right phone/fax/post office box number.

And while all that’s going on, something else has come up. It’s a lot of work and it’s stressful! Even if we do manage to talk to someone on the phone we have to go into “stand and fight” mode before we even start. Because nothing is easy and no one at the other end is going to give in. If we’re lucky (and I use that term loosely) we get transfered to the next higher up on the food chain so that we can go through our case again. And then what? Normally it’s wait and see. Or, “We’ll mail you the forms to fill out.” Again.

What I have on the go includes (but is not limited to) getting an aid to help my 20 year old Autistic son in class so he can graduate high school this year; getting the funding I’m entitled to for my other son’s eyeglasses; finding out what the hell is going on with the holter (heart) monitor his cardiologist ordered months ago; sorting which hoops I have to jump through for the nurse at his school who doesn’t want him to eat by mouth this year, this after a lengthy process (with a two year waiting list) of having a swallow study done, followed by a report which was discussed at a meeting with the specialists and the above mentioned nurse to explain that he could eat by mouth; finding out what happened to the money my mother was supposed to get back from the condo corporation after we sold her unit… The list goes on and on. And it’s all wrapped up in bureaucratic bullcrap.

Luckily I’m a stay-at-home mom, so I don’t do anything all day anyway… 🙄

I’m sure I’m not alone in this. In fact I’m sure there are others out there who have it even worse than I do. I have to wonder if there’s a better way to do things. Don’t you?