A few days ago, right before the big kickoff for the April A to Z blogging challenge, all my formatting disappeared.

Weebly doesn't seem to be helping - so ....   I've set up a new site on Wordpress... 

Please visit, subscribe, and follow me there until (if) I figure out what happened and how to fix it.

http://walkersvillemom.wordpress.com/

The A to Z Joshism posts will come from there, every day in April (except Sundays) - at 3:21 pm  

Lately, a friend of mine has been encouraging me to "read more blogs" by simply stating the obvious:  "You need to."   :D  She's right of course,  I do need to branch out and read some things outside of my comfort zone.   I've been faithfully following her "advice" for a few weeks now and it's reminded me of one of my own personal truths:

One of the things I read the other day was a discussion about paper plates.   You may be thinking what does that have to do with anything?  Someone posed a question about the use of paper plates and one of the comments was something like "Really, in this day and age who doesn't have a dishwasher?" (Bless her heart)  I actually laughed out loud when I read it.  I can remember being in a similar place in life.   When Josh was young I used to think, "I wonder why companies spend so much time and effort re-inventing dish detergent when most people use dishwasher detergent now."  

Ha!

Sometimes we don't see how limited our view of something really is.   Until you've "been there" you can try, but you can't really relate.  I think that's why I'm so drawn to the moms I've been meeting lately on The Road We've Shared.   I don't have to explain my position, they just get it.  No, we don't always agree, actually very rarely do we have the same opinion about things.  What we do share is an appreciation of each other's road.  We have an idea of what it's like.  We understand the pressures and concerns, we know the history that embroils each fork in the road.  It's extremely easy to talk to someone when you feel such a connection.

Then today one of the blogs I found was written by a mother of a young child who has CF.  I was in tears reading about how she doubts herself daily with the decisions she makes regarding her daughter's health care.  These are daily, life and death decisions.  Imagine the pressure.  She talks about having a bad day after finding out another child, the same age and with the same diagnosis as her precious one, passed away.  I could literally feel her pain.  I wouldn't have understood it quite as well before January of last year.  But my perspective on that has forever changed.

So today has been all about perspective for me.   Realizing that my own is different from everyone else's, and even different than it was a year ago, and ten years ago.  If we're lucky, our perspective changes and grows as we do.  We have to be ready and willing to listen to others in order for that to happen.  Thanks for listening!

In addition to being World Down Syndrome Day, today is also the day for the big "theme reveal" for the A to Z Blogging Challenge going on next month.   While over on The Road We've Shared, we'll be hosting guest bloggers to talk about different topics, here on Walkersvillemom it'll be all me.....  (hold your excitement please.)

It may come as no surprise to my regular followers but my theme for the challenge will be "Joshisms: A Pictorial Alphabet."     I've already picked out 26 pictures of "The Joshman" to represent each letter.   He's excited to be the "star." (Like there was ever any doubt.)   I'll be spreading the love and awareness all next month on a regular basis - hope you'll join me!

 Now, Josh isn't want to complain, and if he does I know it's serious.   Since he wasn't speaking directly to me - that's his trick - yesterday I was supposed to pick up on the fact the he was telling "his boys" (the stuffed animal menagerie he has around him at all times) that he wanted something that started with an e and had two g's.  When the inanimate objects failed to get my attention after a few minutes, he announced that he would have to give his mom the silent treatment until she made him breakfast.

So back to "the problem."  While I'm deciding whether or not to interject into his conversation with himself, he says that the problem is with "this big foot."  Okay, I think, it's medical, I better find out what's going on.

"Is something wrong with your foot Josh?"  I break into his train of thought and it takes him a minute to re-group.   

"No.   I just tripped over this big foot." He says.

"Are you okay?"   I wonder, but know that it can't have happened any time recently - he's watched at least four episodes of "Law & Order" today and I haven't heard a thing until now.

"Yeah," he smiles, "But I tripped over that cord.  You know, my game, and landed on this big foot.  It's not hurt."  (He's waving his foot with the slipper on it in my direction to make sure that I see how big it is.....)

After a few minutes of back and forth, I'm convinced that this was not a recent occurance, that he is in no pain, and that it doesn't require medical attention, so we go on with our day.  

A few days later I realized that he hadn't mentioned playing his new Playstation 3 that he got from his Aunt and Uncle for Christmas in the past few days, or had it been weeks?  I start to replay the "problem" with his "big foot" and wonder if the two may be connected.

"Josh, is there something wrong with your game?"   I ask half afraid to hear the answer.   "Is it not working?"

"Well," he stutters.....  "Yes"

Hmmm....   the plot thickens.   "Yes, what?"

"It not work.  My big foot."

Visions of crushed plastic hidden somewhere in another room race through my mind as I try to remain calm - all the while secretly wondering just how long it would have taken him to actually SAY that he had broken his game.

"Well,"  I start with quiet restraint,  "why don't you bring it here so I can see if I can fix it, or take it somewhere to get fixed."

Now, this kind of thing had happened once before, but it involved a CD that "accidentally" got broken into several pieces.  The only part of the story I ever got was that it involved a momentary loss of his temper....

Phew!  All that for an $8 cord....  "I can probably get that online"  I say.  "Really!?"  he smiles so big you think I'd promised him the moon. 

A few minutes later the damaged cord is ordered and I let him know it's on the way.   "Mom! You're the best ever!"  He says comfortably seated back in "his chair" with the boys surrounding him and his "big foot" under a blanket, no longer needing to be on display.  

That's what a day with Josh is like!   Full of drama, intrigue, and so much love that everyday, little things like fixing a broken appliance make you "the best Mom ever."   Nope, I wouldn't trade it for the world!

As with any good project or relationship, learning is part of what you trade.   If you’re committed and serious about the venture, you share yourself with the people involved and you’re open to new experiences and ways of looking at things, even if it’s uncomfortable.  This week I’ve experienced two situations that have challenged how I look at myself, my parenting, and my writing…  Thought I’d share them with you.

The first came when a friend and fantastic writer focused her blog on “Choosing Stories.”    In it, she talks about how we as parents who write about our children who have Down syndrome construct their story and choose how we portray them, and ultimately Down syndrome, to our readers.  She skillfully links the way she, as an adult, feels about the stories her parents tell about her childhood, to the way our children will view what we write.  Will they approve of what we said?  Will they tell us we’re completely wrong about how we portrayed them?  It's a great piece - her work is always fabulous - and it gave me pause to think about what I share about Josh and how I feel about parent narratives in general.  

As far as what I write about Josh, I try as often as possible to use his own words in the telling.   I've also shared all the pictures / videos I post of him and he LOVES them.  He likes the idea of being "famous" and you can tell he's proud that I want to share them and others "like" and comment on them.  But, the stories about my experiences of being his parent are more a commentary on other people - schools, doctors, government institutions - than they are about Josh.

In creating “The Road We've Shared,” my goal has been to create a space where all parent narratives are welcome and valued – even and especially if they don’t agree with mine.   It’s my opinion that the only way we can grow and learn is if we actually take the time to listen and value other perspectives.  For example, I chose guardianship as the first topic of the month specifically because I know that there are lots of different ways to see and experience it.   From my perspective as facilitator on TRWS, it was a fabulous success!  We had contributions and stories from a wide range of families – from parents who view guardianship as a last resort to those who see it as the only logical choice given the current legal system.

Both pieces, and the fact that I am scheduled to talk at the IDSC 321 Conference about sharing stories, have caused me to re-think and fine-tune my perspective on parent narratives.  

In the interest of space, and so as not to overload one post, I’ll tell you about the other thing I read that caused me to take inventory on my parenting skills next time.  I’ll just say that it has to do with this month’s topic, “social” and how I have/have not succeeded in helping Josh create relationships.  Here’s the piece if you want to jump ahead.  :D    

Okay, I'm not a big O'Reilly fan, but as I was searching for news on Governor O'Malley for a new "Scoop It" board, there was a link to an article written on May 15th about how O'Reilly was "riding O'Malley hard over Baltimore jail scandal."  The title piqued my interest.

The story itself was interesting.  Apparently there are big problems in the Baltimore jail system.  What's even more interesting (to me) is O'Malley's reaction when he was questioned about it on camera.

I actually had to stop the video and take notes because I couldn't believe what I was hearing.

O'Reilly claims that there is a law that ”makes it difficult for the state of Maryland to discipline corrupt prison guards.”   Then, reporter Jesse Watters confronts O'Malley: the “Washington Post and the FBI both said that the bill that you signed in 2010 allowed these unionized correctional officers a very permissive culture and allowed them to run wild.”

Okay, I had to look that up.   Yep - in an article published on May 27, 2013 the Washington Post editorial board said this:

And what was O'Malley's response to these accusations?  “I disagree with that assertion…I don’t believe there is any impediment to our ability to rout out corruption in our prisons.”

Hmmm......  

O'Reilly follows with a question- to the audience- “Then why has this been going on for four years?  Obviously the state of Maryland is not controlling the prison system.”

Which was followed by another pearl of wisdom from the esteemed Governor:

"It’s also about not being shy regardless of, you know, the cheap shots of Bill O’Reilly or other people take when you go after corruption.”

Since all this happened last May,  I wanted to find out what recent news there was on the subject.   The Maryland General Assembly session started on January 8th, and among other things, like the minimum wage and legalizing marijuana, they are expected to address reforms that were recommended after the scandal.

From WYPR News

Random thoughts keep running through my head and I just had to write (rant) about them:

• Hmmm....  passing the buck yet again aye?
  
• What is it with law enforcement that makes O'Malley so ... useless?
  
• Were the guards in Baltimore friends of Jenkins'?
  
• Seriously.  Is there any chance this guy is still thinking about running for President?   
  

End rant.  
Comments welcome.

Yep I heard about it from my mother.   (LOL!  Love ya Mom!)

We were talking on the phone and she brought up the show "Shameless."  I'd never seen it so I had no idea what she was going to say next.   When she finished relaying the story, all I could say was "how did I not hear about this?"

Once I looked it up and realized that it happened last March I was really confused.  None of the disability advocates that I read and listen to mentioned it - or if they did I completely missed it.  One of the articles I found about it (and there aren't many) said that the episode in question aired during the "Spread the Word to End the Word" week... seems like somebody would have said something that I would have noticed.

In case you're as clueless as I was, here's a clip from the episode.

I haven't found the full episode yet, but the premise is interesting.

• First, there are actors in the scene who actually have Down syndrome.
  
• Second, there is a philosophy of thought (whether you agree with it or not) that use of the word by the people who it's meant to demean takes away its power.
  
• Third, is a comedy show the best place for this discussion/on the flip side/ is it the only place this discussion might occur?
  

Like I said, there isn't much out there in the way of commentary.   What exactly does that say?  Is it because the show isn't that popular?   According to "TV By the Numbers" there were 1.66 million live viewers - it was in 25th place among original cable shows the night it aired (whatever that tells ya).    Or does it not warrant discussion?  We had more discussion about the "Guinness" ad when it came out and it was a 30 second beer commercial.

So the one interesting comment I found was the person who recognized the significance of when it aired:

The article she's commenting on is from DaveTV on ChicagoNow.com - not exactly mainstream, or even disability related media.

What were they trying to do/say and did it work?

I figured if I hadn't heard about maybe I wasn't the only one.  It wouldn't be the first time if I am the only one who missed it, but still, it's worth throwing it out there for discussion again.

So let's go on record.   What do you think?  

So much to do! I think I'm officially immune to caffeine.  

Just wanted to make sure I updated everyone in case there are readers who aren't on Facebook.  

First, and foremost in my thoughts, this is a very emotional week for the Saylor family so I'm thinking of them often.  A group of us will be posting and tweeting on Thursday, the 9th which would have been Ethan's birthday.   We'll be using the hashtag #Toast4Ethan and talking about why we love someone who has Down syndrome and about Ethan's life and legacy.

Also, I've been lucky enough to join with a pair of pretty fantastic moms in a new venture  (Karen from "Just Joshin' Ya" on Facebook and Mardra from "Grown Ups and Downs" on the internet).  We'll be creating an online community for parents and caregivers of adults who have down syndrome.   Come check us out at The Road We've Shared.

Also, I just had my first article published by IDSC!  I got the awesome chance to talk to Christian Royal's Mom, Helen and had such an amazing conversation that I couldn't fit it into just one article.  So, I wrote two. You can read about my more person reactions to that talk on my other blog.

On top of all that, I've been working with Gail Zahtz and learning TONS about health/design, social media, building communities - and even some technical software stuff !   You can check out the new site I'm working on for her at ALifeGuide.com  Join us for a Twitter chat or BlogTalk Interview!   You never know what you'll learn.

So...  I need a LONG nap...   

But first - I'll share today's "Joshism"

It never hurts to encourage you kid...

Josh has been playing his Playstation 24/7 since he got it for Christmas.  No surprise, it has started to cut off randomly - either from overheating or just some cosmic way of saying "Take a break Dude!"   I can hear him say things like, "Again. That's okay, I'll fix it."  

So I said to him today that I was so proud of him and how he handled his frustration.  That he was being very adult by staying calm and not "throwing a fit."   He laughed and ate it up.

A little while later he tells me that he accidentally spilled the cat's water bowl and "in his head" he got "a little angry" and "some cuss words" might have "slipped out."

First, I asked him if he had cleaned it up.  "Yes" he said.   "Okay then, accidents happen" I told him.  

In typical Josh form, he went on and on about the story.  "I said the D word" he confessed.  "Yeah, that's probably the one I would have used too"  (can't lie when he's being so honest)   

Gotta Love Him!