Stephanie Holland - Walkersvillemom

The latest song from one of my favorite bands reminds me of #JusticeForEthan.  

"Hey, hey, just obey"

That's the cult of compliance in a nutshell.


"We won't give up, we won't go away. 
'Cause we're not about to live in this mass delusion."

This week, Ethan's mom, Patti Saylor, held a press conference in Frederick, Maryland where she came out in support of Sheriff Chuck Jenkin's opponent - Karl Bickel. 

Not only has she, and many others, made great strides toward the goal of meaningful training for law enforcement and other public servants, now she's working on systemic CHANGE in leadership.

Patti won't give up, and neither will we!

What are your habits?
You may immediately think of some negative habits. Things no one is proud of or are downright rude.  Like, biting fingernails, cutting people off mid-sentence, or checking our phones ad nauseam?  

The thing is, I bet that you have some pretty great habits as well. Like, kissing your significant other when you leave in the morning, brushing your teeth at least twice a day, and putting your car keys in the same place when you get home. These are all simple and good habits.  

Why is this important?

Habits are our behavioral autopilot. If you are unsatisfied with the state of your overall health, it is often a result of your habits, or at least can be improved with new habits.

It is important to understand that your old habits don’t make you a bad person, but still realize that in order to achieve your wellness goals, old habits must change. After all, it’s those very habits got us into this mess, or are keeping us from improving.

Change is not easy.

Originally posted 3/24/14 by Stephanie Holland

In preparation for our 321 eConference session yesterday, "Finding Support via Social Media - Blogging and Internet Communities" - I did a lot of thinking about WHY I choose to share my story on various social media outlets.

In the 45-minute session, we had a lot to cover, and team member Mardra actually VOLUNTEERED to drive!  (Love her!) Sidebar - you know you're in the right place, on the right path, when the members of your team each have a great resume of specific talents that are different from yours but at the same time they really GET you and you talk together like you've known each other FOREVER!  I am grateful every day that I found them and that they can put up with my shenanigans.

ANYWAY - Mardra prepared a fantastic presentation and asked Karen and I specific questions in order to prepare us.  One of those was:

Why do you choose to share on-line?

followed by:

Why is it important specifically for advocates and people involved within the DS community to share their stories publicly?

I managed to come up with "bullet point" or "Twitterized" versions of my answers to those questions for the purpose of the session, but I feel like I didn't really explain my perspective in terms of some of the recent controversies swirling around in our community.

Originally posted 3/19/14 as part of the IDSC World Down Syndrome Day 2014 blog hop by Stephanie Holland.

 I started our blog, The Ordinary Life of an Extraordinary Girl on August 26, 2009 with the following introduction, “Today  I decided I wanted to chronicle the life of Alex, a 16 year old high school  sophomore with Down syndrome. I am hoping to share the triumphs and challenges of raising this remarkable daughter. I choose today to start because it is her third day of school and the first day of football practice. I plan to finish this narrative at the end of July 2010, which coincides with the conclusion of the National Special Olympics in Lincoln, NE where Alex will be representing the state of Colorado in track and field”. 

I immediately became hooked on writing and almost 550 posts and a book later I still love writing and blogging about Alex.

Originally posted 3/21/14 in celebration of World Down Syndrome Day by Stephanie Holland

Today has been so exciting and energizing!  I've participated in the 321 eConference, and listened to Dr. Capone address the United Nations !  I've only begun to look through all the fabulous pictures and blog posts celebrating "designer genes" that have been shared online.  Josh and I have danced to "I'm Happy" several times already today.  And it's only just begun!

How COOL is that!

Josh helped pick out these pictures and was "too proud with me" about sharing them for WDSD.  He kept saying - "Look at us!"  with a big ol' grin on his face.   

Indeed - look at us!   The road may not have been easy, and hopefully there's a lot more to it!  We'll keep working and sharing, not just for our family and friends, but for anyone who will listen.  We love each other - we're happy - and we're grateful for the friends we've made along the way!

Happy World Down Syndrome Day!  #WDSD14 

Originally posted March 20, 2014 by Karen Gregoire of Just Joshin' Ya

I'm sure you all know by now that Josh's favorite singing group is Celtic Thunder, right?!?!?  Well, if you didn't, you do now.  :)

One year ago tomorrow THIS happened:
  
Josh's Mom (Karen),
Your Tweet got a reply!

@GDonaldsonCT @RyanKellyMusic @neilbyrne_CT @laursadurrant
@DeclanODonoghue 
It's World Down Syndrome Day ~ A RT for Josh, your biggest fan?

George Donaldson  @GDonaldsonCT
Hey Josh Hello from Glasgow, hope ur having a good day
02:55 PM - 21 Mar 13

When I showed Josh this Tweet from George, he and I were jumping around with excitement!!  "George sent you a message" I kept exclaiming OVER and OVER, like a crazy woman!  You have to know that none of the guys, that I have ever seen, have directly Tweeted to a fan (maybe they have and I just want to believe we meant something extra special to George).  They will retweet, but I've never seen any of them REPLY to a Tweet!  What a GREAT day it was on 3/21/2013!  Josh and I both felt very, very special by George's gesture!

THIS YEAR, on March 13th, 2014, George passed away suddenly and unexpectedly at the age of 46 (leaving behind his wife Carrie and his 13 year old daughter, Sarah) ~ the light of his life, as he would describe them!  

George's untimely death also left Josh (and mom) very saddened at the thought of never again getting to meet him in person, as we had so many times before.  George was a class act with a heart and soul made of gold, always willing to spend that extra time needed to make Josh feel appreciated.  The thought of never being in his presence again, never getting to experience his talent live and to never again be able to see and hear him on any new Celtic Thunder DVDs or CDs has been quite overwhelming to both of us! ~ (As you all know, if you follow Josh's stories, Celtic Thunder DVDs and CDs are like GOLD to Josh!!)  

What a difference a year can make!  :(  George brought us so much happiness and joy.  I'm not at all convinced that their shows will ever be the same without The Big G there to wave at, wink at and high-five Josh, but we'll keep an open mind!  We do know, for sure, that he is entertaining everyone in heaven with that huge George Donaldson smile, lovely voice and his guitar!  

Originally posted March 8, 2014 by Karen Gregoire of Just Joshin' Ya

I don't have any one story that pops into my mind that I can share with you about Josh.  Specifically, because I share daily stories about his life on his Facebook page, Just Joshin' Ya, so it would seem that I'm all storied-out, OR NOT!  

As of late, I've begun to realize that Josh has started to take over the driving responsibilities "on his own road"; whereas, once upon a time, dad and I were driving and it was our road.  Josh is currently most definitely taking the wheel from us, slow but sure.  The transition HAS begun, whether I like it or not, and I hadn't even realized it until this last month when Josh was sick with a bug after a bug after another bug.

During the month of February right into March, so many amazing things happened in the face of him being sick.  February 7th, Josh, dad and myself headed on over to Josh's school to meet with the rest of the team to develop his IEP for the coming year.  He voiced lots of opinions, more than in any other year.  When we left the 2 hour meeting, we stopped to get a quick lunch and headed home to eat.  Within 30 minutes, he was vomiting and other things followed shortly after that.  No need to be descriptive, you get the picture. 

THIS IS WHEN JOSH STARTED TO TAKE THE WHEEL FROM ME AND DAD, LEAVING OUR ROAD AND DRIVING OFF ONTO A NEW ROAD THAT HE HAD JUST DISCOVERED FOR HIMSELF!!!  

Originally posted 2/24/14 by Stephanie Holland

As we start the last week in February I'm taking a moment to reflect on "social" month on The Road We've Shared.

This picture was taken the day of the Boardwalk Buddy Walk in Rehoboth Beach, DE.   Josh and I went to support the Saylor family and TeamEthanNation.  It was a great day of fun and dancing for Josh - for me it was bittersweet -  remembering Ethan and spending time with one of my very best friends that I don't see often enough.

Originally posted 2/3/14 by Stephanie Holland

The topic is broad for a reason - we want to hear what your thoughts are when we say "SOCIAL."  If you're like me, certain words immediately trigger a reaction.   What does the word and the concept mean to you?  Share your stories with us! 

When I think about Josh's relationships I have mixed feelings.  He's very social (unlike his mother lol) and LOVES to be with people.  He has a few great relationships with family, but for the most part, when he talks about friends, they're people who have been in his life for brief periods.  
He talks often about his "girlfriends."   To him, Emma is one of those and her name comes up whenever someone asks if he has a girlfriend.  Emma is the daughter of a friend of my mother's.  She happened to be the right age to be his "date" for the prom and was willing to go with him.  He hasn't seen her since.